2014 has been a critical year for how Medicare handles its coverage of SGDs (Speech Generating Devices), and the result has been significant impact on individuals with complex communication needs. Currently the Centers for Medicare and Medicaid Services (CMS) is taking comments on a National Coverage Determination (NCD) for SGDs and so the situation remains dynamic. Read Amy Goldman's explanation of the issues and the history that has led to this policy moment in the latest AT Program News. CMS needs to hear from as many knowledgeable people as possible before December 6th about their experiences and the SGD functions that individuals need. Submit a comment to CMS
Posted by Roy Bouchard on 12/03/14
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. [PHI Redacted]has been living with, and suffering from, ALS for more than four years now. She has been totally dependent on an SGD device with eye gaze technology for over 2 of those years and has no other means of communicating. Without that device, she could not regulate the heat in the house as well as other utilities when I’m not around. More importantly, she needs to communicate with the outside world via the internet in order to live some semblance of her normal life. This includes communications with outside caregivers (health aids and others setting up schedules) and for personal business that is either too sensitive or private to be transmitted via audible output or hard to convey by the immediate caregiver to another party.
Restricting eligible speech assistive devices to speech-only capabilities would significantly reduce the ability of these people to communicate with a wide variety of outsiders (what, after all is the difference between audible speech and written communications re: directing ones care or planning day to day events in one’s life?) It is also a mental health issue. In [PHI Redacted] case, her hallmark personality trait is outreach to others and a wide circle of friends, which she has been able to maintain despite her total disability. Without this internet capability, I know she would have a harder time fighting off the despair which I have seen other isolated people struggle with. Consider the relative benefits vs. the minimal additional cost to enable these devices to use internet services, (which the user pays for anyway.) most if not all the capabilities to ready an SGD for such communications are necessary as part of the software-hardware configuration anyway.
So please do not further debilitate and impoverish the most dependent of our population, totally disabled people, by restricting eligibility to really capable SGD devices.