And it's more serious and the consequences of a wrong decision can be deadly.
Pittsburgh has always been a difficult city for me to navigate. The roads don't go straight, there are three rivers that can disorient you, mountains block the view of landmarks, and people there are kind to give directions, but their directions can be wrong when they try to direct you beyond the neighborhoods they know. Once I even spent hours being lost because a street sign was turned and I went down the wrong road. That's frustrating, wasteful, and dangerous, but I always manage to get home.
Families dealing with ALS have to navigate choices every day. I've always said that I would never second-guess the choices they make because their options are never good. They rely on the maps and road signs and directions supplied by others to help them find their way through the winding roads in a speeding car on a course that never takes them where they want to go.
Their choices matter. They can literally be a matter of life of death. If you are spending the kids' college funds trying to keep up with the demands of ALS, you may make some choices that you never would have considered before the ALS. If you are losing your home and your spouse has lost a paying job for caregiving, the options that you weigh are bad versus worse.
If people with ALS get bad directions, that is a problem. But it's not just another problem. It's a life-and-death serious problem. Please take a look this analysis done by a woman with ALS whose son also has ALS. The second section of that document tells us that people don't always get the correct advice. There are existing benefits that many never hear about. That's outrageous. People are making life-and-death decisions here!
Please consider the petition and chime in if you agree that there is no room for "Oops!" This must be fixed. Now. Just like a turned street sign, it's not that hard to fix if you just do it.