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The new level of awareness of ALS from the “Ice Bucket Challenge” should be directed at improving the quality of life for patients as well as finding a cure
I’m using ModelTalker voice synthesizer for musical purposes. The intended use of the program is to allow patients with children to grow up hearing their natural voice, instead of a robot's
Congress, however, has gone in the opposite direction, with incredibly cruel repercussions
From http://www.medicareadvocacy.org/medicares-reluctance-to-embrace-technology-effects-on-the-coverage-of-speech-generating-devices/
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Medicare Changes Its Coverage of Speech Generating Devices
Through a new interpretation of longstanding rules, Medicare is currently leading an outright attack on coverage for Speech Generating Devices (SGDs). SGDs are typically tablet-like units that allow a person to communicate thoughts by electronic voice generation when he or she is no longer able to speak. Without an SGD, which is highly personalized and uniquely programmed, many people are isolated and awake, trapped inside a body they cannot control, with no ability to communicate.
Effective April 1, 2014, Medicare will no longer purchase an SGD for a beneficiary; instead it must be rented. Further, if a person is in the first 13 months of using a rented SGD and he or she enters a hospital, long term care facility, or hospice, Medicare will take the person's SGD and "voice" away.
Effective September 1, 2014, if a person's SGD has the potential for any function other than speaking (for example, email), then Medicare will not pay for the person's ability to speak through an SGD – even though Medicare has never paid for additional functionality beyond speaking (any additional functionality has always had to be privately paid).
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Let's make sure that some of this new awareness is directed at lawmakers who are deliberately increasing the level of hopelessness (maybe fewer will choose ventilation?) among ALS patients in the name of fiscal discipline.
Please, write your Congressman and forward this e-mail
http://leeabramson.com
I’m using ModelTalker voice synthesizer for musical purposes. The intended use of the program is to allow patients with children to grow up hearing their natural voice, instead of a robot's
Congress, however, has gone in the opposite direction, with incredibly cruel repercussions
From http://www.medicareadvocacy.org/medicares-reluctance-to-embrace-technology-effects-on-the-coverage-of-speech-generating-devices/
-----
Medicare Changes Its Coverage of Speech Generating Devices
Through a new interpretation of longstanding rules, Medicare is currently leading an outright attack on coverage for Speech Generating Devices (SGDs). SGDs are typically tablet-like units that allow a person to communicate thoughts by electronic voice generation when he or she is no longer able to speak. Without an SGD, which is highly personalized and uniquely programmed, many people are isolated and awake, trapped inside a body they cannot control, with no ability to communicate.
Effective April 1, 2014, Medicare will no longer purchase an SGD for a beneficiary; instead it must be rented. Further, if a person is in the first 13 months of using a rented SGD and he or she enters a hospital, long term care facility, or hospice, Medicare will take the person's SGD and "voice" away.
Effective September 1, 2014, if a person's SGD has the potential for any function other than speaking (for example, email), then Medicare will not pay for the person's ability to speak through an SGD – even though Medicare has never paid for additional functionality beyond speaking (any additional functionality has always had to be privately paid).
——
Let's make sure that some of this new awareness is directed at lawmakers who are deliberately increasing the level of hopelessness (maybe fewer will choose ventilation?) among ALS patients in the name of fiscal discipline.
Please, write your Congressman and forward this e-mail
http://leeabramson.com
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