I have been silent on this issue because frankly I thought once PALS (People with ALS) directly impacted by this decision and ALS organizations pointed out the pure stupidity of it and the fact it will save absolutely NO money and may cost more from the idiotic rental rules, this would be corrected. Apparently I was wrong since to date nothing has been corrected. For someone with ALS, communication quickly becomes an issue. For most it becomes an issue for even communicating with those closest to them so it is a necessity for them to use technology to communicate. Think Stephen Hawking as a point of reference and his computerized voice. Fortunately my progression has plateaued at a point where my family understands me for the most part making the need of this technology unnecessary for me most of the time. However, when I move outside the bubble of my family especially without one of them to translate for me, my ability to communicate shrinks almost to nothing and my risk of something serious happening which could jeopardize my life increases substantially. Now if my condition deteriorated a little further and I needed one of these devices, these rules would prevent me from using my own money or donations to upgrade the device to access the internet, control my environment or even use a program like Microsoft Word to write. This would shrink my world to my immediate surroundings making my already limited life extremely small and unfulfilling. The most disturbing part of this move is that they will not allow the person to take their communication device into a hospital where communication is the most essential and life threatening. They refer to the hospital providing a communication device which in my experience is a letter board. Can you imagine having all your ability to communicate limited to just a letter board when you are sick and in pain to communicate with doctors and nurses about the problem your experiencing which can be time critical and youre only using blinks to indicate letters? It is the most agonizing and frustrating process you will ever go through especially if you know there is a better way you have been denied using! Please help us correct this idiotic ruling by writing your US Senators and Representatives. standard.net/Health/2014/10/27/ALS-patients-face-loss-of-coverage.html
Posted on: Tue, 28 Oct 2014 21:44:49 +0000
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