Via ALS Public Policy – comments close 12/6/14

 

 

Contact CMS: Help Ensure Access to SGDs

 
We need your help TODAY to ensure people with ALS continue to have access to speech generating devices (SGDs). Please use the sample language and instructions at the end of this alert to contact the Centers for Medicare and Medicaid Services - let them know that Medicare must ensure access to SGDs!

Background
In November, the Centers for Medicare and Medicaid Services (CMS) announced that they rescinded the "coverage reminder" that was issued last February that would have prohibited Medicare from covering SGDs that included functions such as email and internet access. While this is an important victory, we have more work to do. That's because Medicare is in the process of revising their SGD coverage policy, known as a National Coverage Determination (NCD), and we need to make sure that the final policy enables people with ALS to access the SGDs they need, including devices that have email, internet access and environmental controls. We also need to make sure that the policy covers technologies such as eye tracking, which people need in order to access SGDs when they have limited or no mobility in their arms and hands.

The ALS Association has helped lead an NCD SGD workgroup that includes the American Speech-Language-Hearing Association, the ITEM Coalition and the major SGD manufacturers. The workgroup has come together to present a united front to CMS, making specific recommendations on how the agency should change its SGD coverage policy. The Association's comments and recommendations are available here: http://bit.ly/1tJkTuA. However, as the NCD SGD workgroup delivers a unified message, it's important that CMS officials also hear from people with ALS and their families, friends and colleagues!!

Take Action
You can make sure your voice is heard by contacting CMS here: http://go.cms.gov/1AFCqNQ. Simply select the orange comment button at the top right of the page and follow the onscreen instructions. A sample letter you can cut and paste is below. We strongly encourage you to customize the letter and let CMS know the critical role SGDs play in the lives of people with ALS. Let them know that people with ALS have a voice and that Medicare coverage policies must not take that voice away. Contact CMS today! The deadline for submitting comments to the agency is this Saturday, December 6, so please take action today.

Thank you for all you do to make a difference!!

SAMPLE COMMENTS

I am writing to urge CMS to establish a coverage policy that ensures people with ALS have access to speech generating devices (SGDs), including the ability to upgrade devices and access additional functionality such as email, internet access and environmental controls. I also urge CMS to ensure coverage for access technologies like eye tracking, which people with ALS need in order to utilize an SGD if they have lost mobility in their hands and arms.

ALS is a fatal neurodegenerative disease that robs people of the ability to walk, stand, move their arms and even wink an eyelid -- to do the everyday things most Americans take for granted. For many people, ALS also takes away their ability to speak. To even say hello or I love you. However, SGDs provide people with ALS a voice. Many of the SGDs needed by people with ALS also have features that enable people with ALS to communicate in other ways, such as through email, texting and online through social media. Moreover, some SGDs provide people with the option to access other features such as environmental controls so that they can continue to live as independently as possible as their disease progresses. SGDs are so critical to living with ALS. They are the window to the world for a person with ALS. Without them, a person with ALS is trapped, isolated and alone in a body they no longer can control and unable to communicate or interact with their loved ones or the outside world. SGDs are essential to living with ALS.

ALS is a horrific disease. Medicare policies should not make it worse. I again urge CMS to establish an SGD coverage policy that provides people the option of accessing additional SGD communications and non-communications functions, including while they are renting devices. I also urge CMS to establish policies that provide coverage for access technologies such as eye tracking. In doing so, Medicare can help improve the health and lives of the people that the program was created to serve.

 

Alisa

 

Alisa Brownlee, ATP

Manager, Assistive Technology Services

ALS (Lou Gehrig’s Disease) Association, National Office and Greater Philadelphia Chapter

 

Office line: 215-631-1877

Business Cell: 610-488-2988

 

Twitter: alsassistivetec

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