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
Below is a comment from Lauren Bowman submitted on 12/03/14:
Until a few years ago, I had no idea what a Speech Generating Device was. I suppose when I saw images of renowned Physicist, Stephen Hawking, I never considered his computer tablet mounted on his chair enabled him to not only speak to people in his presence, but was the conduit for him to challenge the world of science.
Now that my life has been profoundly affected by far too many people with ALS, I am more than aware of the need for Speech Generating Devices and for them to be available with their full technological abilities. I won’t address the rules “reminder” points (capped rental, eye gaze, locked devices, etc), but instead simply want to point out that this rule sets up a number of barriers that prohibit the patient for what the former Secretary of HHS outlined as “Person Centered Planning”. Not only are these rules barriers, but they also create an unsafe environment and prevent the patient in many cases from managing their own care. While it’s not pertinent to these comments specifically, the rule, if enforced likely costs much more over time than if the patient had full technological access with the SGD and could manage their own care and environment vs having another human complete those tasks. We strongly believe the efforts toward Person Centered Planning (PCP) is most appropriate for a person living with ALS or any other physically restrictive condition where the patient’s cognitive abilities have not changed. In ALS, most often the patient’s cognition is even sharper than before diagnosis. What was written: “PCP must be implemented in a manner that supports the person, makes him or her central to the process, and recognizes the person as the expert on goals and needs. In order for this to occur there are certain process elements, consistent with statutory or regulatory provisions.”
A patient who has the full ability of their SGD can better manage their care, contact and connect with CMS, speak to their physician or care services representative and function as their own, The device would expand their abilities beyond the bedside, making them the central focus on every level in their care plan.
Additionally, their are safety issues when locking the devices. We’ve already seen a few people who needed emergency assistance outside of earshot and their locked devices could not connect with 911 or a caregiver for help.
Finally, I want to add that these devices are not just computers to those who use them. They are an extension of the person. The device allows them to communicate in the same ways we all do in the 21st century. Sit in a single chair for a week, take away your phone and keyboard and you will learn on a basic level what it is like for someone living with ALS and using a locked device. The SGD for many is as important as any medicine. With ALS, there is no treatment, but in most cases, the SGD acts as a medicine or even a prosthetic, allowing them to continue living with purpose, dignity and in centered on their own care.
People like Stephen Hawking are changing and challenging the world with their minds through their SGD’s. CMS is in a unique situation to review old standards and move toward more innovative solutions for patients utilizing current technology, while also leaving the door open for new advances. Let’s not miss another Stephen Hawking in the thousands of people who use or will use these devices.