WASHINGTON, Aug. 25, 2014 /PRNewswire-USNewswire/ — 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.
Congress, however, has gone in the opposite direction, with incredibly cruel repercussions.
"I'm using ModelTalker voice synthesizer for musical purposes," said Abramson. The intended use of the program is to allow patients with children to grow up hearing their natural voice, instead of a robot's. Funding for these programs have stopped.
More importantly, since April 1, electronic devices that allow ALS patients to communicate with caregivers and use the Internet must be rented, whereas before they were customized to a patent's needs and abilities, be it a HeadMouse or eye-movement tracking systems (as the disease progresses the eyes are the only muscles they can control).
Disturbingly, starting September 1, if a patient moves into Long Term Care or Hospice, the device is taken away, leaving them needlessly locked-in.
Abramson wants to 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, and he urges people to contact their local Congressman about this issue.
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