There is a guy on Youtube i like to watch. He’s severely diabled, though that isn’t the focus of his channel. One point he makes is that its not that these things are unfixable: often if you push enough, appeal enough, talk to enough people, you can find a loophole or get an exception. But the effort to do so is just overwhelming, and every step of the way you constantly have to explain, over and over, why you need these things to stay alive. You are fighting against an institutional assumption that you are trying to scam a free feeding tube or whatever. And the whole time, what is an academic question for them is literally life and death for you.
And even once its settled, its not really because then someone else notices the same thing in your file, re-denies it, and you have to start all over again. Or they change the system. Managing your system to get medical stuff covered is like a job, a huge category of your life.
I thought SHIIP was run by former insurance salespeople and executives, who would at least have some idea what they’re talking about, and not just people off the street.
Not in my hometown. The two gentlemen I have spoken with in the past couple of years were a retired teacher and a retired preacher. They knew how to navigate the web pages to look at the various available plans, but not much more.
The medical fun never stops in the USA. Sorry you guys are going through this. doreen has posted some good advice. It goes as I understand it also. I think the big thing is if it’s SSI or disability. People often confuse the two.
Not me, but I have a friend that has had the same success as you. He has severe emphysema and has been receiving free inhalers from the manufacturers, three different companies, for about ten years now. He signs a piece of paper every year at his doctors and that’s it until next year. He’s paying zero for something that would cost him about $2,000 a month. It’s not near what you are talking about, but it’s worth exploring.