I wanted to post a thread about SSDI/SSI and the process of either getting this or denied.
I have posted my trials and tribulations in another threat in the Crohn's Disease topic and I wanted to tell everyone one about the "hassels" you have to go thru in getting your SSDI.
"I just want to give everyone a bit of background about me. I found out I had Crohn's in 1989, Had a fistula removed that destroyed 50% of my rectal muscle. I did have medical treatment back then. Between 1990 to 2004, I graduated from college, then my son was diagnosed with Autism, so I worked a full time (stressful job) and put my medical needs aside to help my son with his autism.
Then in 2004, I became sick, the doctors in Atlanta did three (3) tests to determine that small and large intestines were so diseased that he wanted to do a temporary colostomy (but then he back tracked and he said it would be permanent) but then said that he wanted to try a drug called Remicade. I was able to take this drug for 2 years until I developed severe reactions to it. From 2004 to present, I have had four (4) employers and I had been released from each job. I had these job to 1) provide food on the table for me and my son, and 2) to provide medical insurance for us. I applied for the Patient assistance program for the Remicade and received the MEDICINE for free (what they don't tell you is that you get the medicine for free, but the infusion part was NOT free). I paid the doctor as much money as I could so that he did not refuse treatment. Also, when I did have insurance during this time, the insurance companies informed me that my Crohn's disease was a "pre-existing condition" and it would not be covered under my medical insurance for 12 months. So any medical treatment for my disease came out of my pocket. So not trying to be deceiving, I did not want to tell my employers I had Crohn's disease, so I did not tell them, but they eventually found out and I was let go.
Here in the state of Georgia, its a Hire-at -will/Fire-at-will policy. I could not use the ADA policy because Social Security claims that Crohn's is not a "disability". I have been fighting with Social Security for 5 years now and finally have a court date in August, 2009 in Savannah, GA. Here are some things about the SSA that are discriminatory, 1) they ask you if you made $800.00 or more in a month and you said "yes", they hold that against you. 2) If you have an education, they hold it against you. 3) If you don't "fit" their criteria for IBD's for SSDI, you are automatically denied. Lawyers, well they discriminate also, I had one from Feb. 2006 to May of 2009. I was told by his assistant that they no longer could do my case because there is no "back monies" that they could fight for. So last week I finally found an lawyer, but I don't think that can prepare my case in time for the court date that is in 2 weeks. As for for a husband, my ex-husband dumped me and my son 20 years ago when he found out that my son has autism. Potential suitors discriminate against you because you are sick and that they would "prefer" someone that is "healthy". The folks at CCFA in Atlanta are trying to get documentation that I can take to court. My last medical visit was paid for by my mom and dad. As my life stands today, I have no job, no car (i have to have people take me places), I am staying with a "friend" of a friend (but this is only temporary) and my life savings is gone. I went from a self-sufficient adult that has been reduced to bankruptcy, being homeless, dealing with mine and my son's illness. I want to tell everyone my story this to show that employer(s), state governments and our federal government discriminates against people with IBD and there needs to be something done. I know that I could of done things a bit different with this bout of the disease, but you have to do what you have to do to survive in this world. I would not want the situation that I am in to happen to other people."
I went to my SSDI hearing and the hearing started an 1½ hours later that my scheduled appointment. I was then asked questions by the judge (for which some of them has nothing had to do with my case). I was asked to hold my hands up in the air and "wiggle" my fingers and other "stupid" questions. Finally after 45 minutes, the judge said that he was going to send me for a "state" paid for psychological exam. I received the letter stating where I needed to go and that I was going to receive a general medical exam and psychological exam. On this letter it says that I needed to bring all my medicines and any doctors records and that this would take 3 hours. I go to the designated place for this appointment and the people in that office stated that "this doctor has moved and we don't know where he went to". I called the office that set up this appointment and they said "oh did you not get another letter telling you that he has moved and you needed to go to another facility". I said I did not get this. So they told me where to go. It was 10 miles away in a "community center" . I arrive there to find a hallway full of people, and no where to sit. After 1 hour of waiting, the assistant to the psychologist brings a clipboard to me with a bunch of math questions on them. The I turn in the test and 45 minutes later I get called in by the psychologist. He proceeds to "fire off" questions at me (again to which some of these questions have nothing to do with my crohns). Finally after 20 minutes, he tells me to go wait in the "waiting area". I am waiting in this "area", and the assistant to the psychologist comes out and says that they are "overbooked" and that this is the fault of the Department of Labor for "overbooking" them. A few minutes later, the psychologist comes out and says the same thing. After 1 hour, I get called back to the assistants "area" and she proceeds to to "fire off" questions to test my memory. They she gives me some blocks and tells me to build the design that is in the picture that she had shown me. After 45 minutes of this, I was done. I had to "run" to the bathroom because she would not let me go to the bathroom and of course I had a "accident". My friend that took me to this appointment went up to the psychologist and asked him if he wanted to see my medical records, medicine and background information about Crohn's Disease and he said to him (and I quote), "NO, I already know about Crohn's Disease". I thought to myself , "Yeah right you do, you are a low paid psychologist that are just "pushing" people out to get to the next $75.00 per person fee". I was there for 4 hours and he did not even want to see my medical records or my medications. I felt like a was on a "speed round" of Are you smarter than a 5th grader.
As of today, nothing has been decided and I have contacted the congressman that is helping me and they have not heard anything. They did say, it will take 30-60 days for the psychologist to get the records to the judge and then he will decide. In the mean time, I take a lot of Tylenol to deal with the pain that I deal with and I had to go to the Urgency Care center because I have a kidney infection that I had been dealing with for 1 week. The doctor said that I needed to go to a gastro doctor as soon as possible because the crohn's is making my kidneys and bladder spasm. He did tell me that I needed to stop taking Tylenol because it is not good for your bladder, kidneys or liver. My pain is getting worse and the metradiazole the doctor prescribed me is not helping. The person I am staying said that my son and I should start looking for another place to live because it was getting too much to deal with. I live off of the unemployment that I have been getting since I was "laid off" from my last job in April of 2008 and I only get $788.00 a month.
Now the Federal government and judge holds my fate in their hands. They will decide whether I get health care or not. I do not have faith in the Health Care bill that is currently in congress because we (the people who have pre-existing conditions) will be shut out and the states and health care companies will still find a way not to have health care coverage. I did this topic that because I want everyone to know what you have to go thru in order to get the SSDI/SSI that you have paid into all of your life. I will update everyone as to anything new that is happening on this.
Contact your senators and congressmen to support ANY IBD legislation. We need all the help we can get to combat this disease.