LoveShines4Austin
New member
Hello everyone *hugs* I need to vent a little bit.
I would like to know:
1. If anyone is on S.S.I.
2. If you are on S.S.I., what age were you when you were approved?
3. If you applied for S.S.I. and were denied, how many times have you tried?
I'm so frustrated! We applied for S.S.I. when Austin was first diagnosed at the age of 3 years and we were denied. I was told that I should be happy that my son isn't sick enough for the benefits. They told me to re-apply when it moved into his lungs. Grrrrr! Don't get me wrong, I was happy that he wasn't sick enough, but I also knew that he was going to need those benefits saved for his future.
Three years ago we applied again. Denied. We got a disability lawyer that took our case and she wouldn't get paid unless we were approved. (10% if he was awarded any cash.) Again...denied. When Austin was diagnosed with CFRD, we were sure they would finally approve it. The doctors sent documents along that said his PFT's were great and that he was in a high percentile concerning his height and weight. He had polyp surgery the year before and is still suffering from growing polyps. He's having a tough time managing his diabetes. I had started home schooling him and even though he was having a tough time, his teachers sent paperwork saying that he was doing fine! Grrrrrrr. We were brought before a judge and he took one look at Austin and said, "I am pretty sure I cannot grant you what you need. You look very well for a young man with Cystic Fibrosis." He asked Austin a good amount of questions. (I was not allowed to speak on his behalf) Austin was very nervous and I don't think that his concerns about his future came through correctly. Anyway...once again...DENIED! Yes, I was told the same thing, "Ms. Warkentin, be happy that your son is not ill enough to receive these benefits."
Every time I go down to U.C.D.M.C., the social worker asks us if we are on S.S.I. and when we tell him no, he always acts surprised. We get, "Almost all of our CF patients are on it, I cannot understand why Austin isn't." Every darn time we have to explain why he isn't.
Now, here is my key question... Now that he has had to be put on the Tobi every other month, and his Staph infection in his lungs is 4+, should we attempt to apply yet again???? I just for the life of me cannot understand why I was approved the FIRST time I applied for S.S.I. for my depression, yet a terminally ill child was denied FOUR times! I'm sorry to rant and rave, but I am at my whit?s end.
I would like to know:
1. If anyone is on S.S.I.
2. If you are on S.S.I., what age were you when you were approved?
3. If you applied for S.S.I. and were denied, how many times have you tried?
I'm so frustrated! We applied for S.S.I. when Austin was first diagnosed at the age of 3 years and we were denied. I was told that I should be happy that my son isn't sick enough for the benefits. They told me to re-apply when it moved into his lungs. Grrrrr! Don't get me wrong, I was happy that he wasn't sick enough, but I also knew that he was going to need those benefits saved for his future.
Three years ago we applied again. Denied. We got a disability lawyer that took our case and she wouldn't get paid unless we were approved. (10% if he was awarded any cash.) Again...denied. When Austin was diagnosed with CFRD, we were sure they would finally approve it. The doctors sent documents along that said his PFT's were great and that he was in a high percentile concerning his height and weight. He had polyp surgery the year before and is still suffering from growing polyps. He's having a tough time managing his diabetes. I had started home schooling him and even though he was having a tough time, his teachers sent paperwork saying that he was doing fine! Grrrrrrr. We were brought before a judge and he took one look at Austin and said, "I am pretty sure I cannot grant you what you need. You look very well for a young man with Cystic Fibrosis." He asked Austin a good amount of questions. (I was not allowed to speak on his behalf) Austin was very nervous and I don't think that his concerns about his future came through correctly. Anyway...once again...DENIED! Yes, I was told the same thing, "Ms. Warkentin, be happy that your son is not ill enough to receive these benefits."
Every time I go down to U.C.D.M.C., the social worker asks us if we are on S.S.I. and when we tell him no, he always acts surprised. We get, "Almost all of our CF patients are on it, I cannot understand why Austin isn't." Every darn time we have to explain why he isn't.
Now, here is my key question... Now that he has had to be put on the Tobi every other month, and his Staph infection in his lungs is 4+, should we attempt to apply yet again???? I just for the life of me cannot understand why I was approved the FIRST time I applied for S.S.I. for my depression, yet a terminally ill child was denied FOUR times! I'm sorry to rant and rave, but I am at my whit?s end.