Has anyone who has a child with cf had your childs ssi taken away?

My daughter was taken off ssi when I moved States due to an available local program, however she was recently taken off this program and I am reapplying for ssi she was taken off due to the fact that I make too much money (believe me they are crazy lol)

I'm new to the board and guess this post is a bit late but my daughter was taken off ssi because they said that she was medically maintained and wasn't in the hospital for a while so they no longer saw her as being disabled. Yea it sucks but thats our goverment.

Yes, I fought to keep my kids on SSI for 10 years now. Everytime I would make too much money, they would cancel it and tell me that I had to pay all my deductables that would add up to $3000 a month. I had to separate from my wife and move out just so my kids could get there medications and so I could help make my kids life more comfortable by getting them the things that make them smile. It's all give and take.

A relative whose ex got ssi for supposed chronic fatigue syndrome got an SSI attorney and got benefits. The reason I said supposed chronic fatigue is because as soon as she got her benefits, she suddenly was cured.

We've thought about going the route of getting a SSI attorney, but at this point, we're managing fine with insurance from work and cutting back on entertainment costs & vacations. If one of us had to quit our jobs to help take care of ds, then it's something we would look into doing.