Included is a link to their submission made on the last day of the 2013 public comments period making their case --
Yesterday's statement leaves me with three troubling observations --
- I agree that petitions are not likely to move government bureaucrats, but there was a potentially powerful public comments period that we all missed. That was the time for citizens to make a number of compelling cases. That opportunity was blown. Fixing a problem is always more difficult than it would have been to prevent the problem.
- There is a legislative item on the table, the Ensuring Access to Quality Complex Rehabilitation Technology Act (S. 948/H.R. 942), that could provide a long-term solution for both Speech Generating Devices and for Power Wheel Chairs. Elected officials could be moved to make this happen. Should this not be discussed?
- The rules go into effect next week, for Pete's sake. Would we have heard anything had a volunteer-ALS advocate not stumbled across the rules changes last week?
And then late last night the ALS Hope Foundation shared this, what seems to be another pertinent public comments period that has only six days left --
Only twelve comments submitted so far. Only six days left.
There is a long-term pattern here. We keep stumbling across things. We trip over pertinent things that have been be well-kept secrets. Why? We stumble to defeat ALS. We are told that the hurdles aren't our problem.
Hiding the hurdles until we trip on them is wrong. Explaining and discussing the hurdles before we get there is constructive. Transparency is essential to reach any vision of defeating ALS.