Hi guys! I'm sorry I haven't gotten off my butt much lately to get up here to this computer and help you all! I've been meaning to do this for a while, and finally wrote letters to the Quality review board and my congressman so I've posted a copy of it here. It tells all the steps I've been through and what has happened at each step. Of course it's pretty brief, so feel free to email me if you have more questions! 
To whom it may concern at the Quality Review Board (and Congressman Tancredo),
I am writing this letter because I was so happy to hear my file was going to be reviewed by Quality Review. I'm so happy to finally have the opportunity to talk to someone and help clarify what's been happening with my disability application file since I applied in May 1998. Following are the sequence of events according to my records:
May 18, 1998, I phoned for an appointment to apply for Disability, and Supplemental Security Income. The appointment is set for June 15, 1998.
June 15, 1998 at appointment, received denial for SSDI when history of work quarters was pulled up and it didn't show enough to qualify for disability because my 1996 income was not listed with the IRS. They showed I was 4 quarters short from 1987-1997. Went ahead with SSI application. Contacted the IRS and had the 1996 income problem fixed, and do have enough quarters.
July 1998 had the independent exam, with none of my previous medical records requested because they noted "no insurance therefore no current sources".
August 1998 received the "Functional Capacity Assessment" which was supposed to be based on all evidence in file, and made using reasoned judgement. It was so completely inaccurate; I started providing more information about my very rare disease so they would have a better understanding of it, and providing more copies of all my medical records.
October 6,1998 (Aug. received denial for SSI) filed a Request for Reconsideration. October 29, 1998, I went into the SS office with my proof from the IRS that the 1996 income was added to my record and tried to submit a copy of those for the SSDI claim, and asked whether I needed a new application for that, or what to do. I was told I'd have to call for an appt. to submit that paper.
November 25, 1998 I called customer service at the 1-800# to verify whether I needed to fill out a new application for SSDI since the IRS had recently corrected my record to reflect 1996 income. She checked, and saw that I did have 25 quarters, and did qualify for SSDI. She also said I did not need a new application, but "when my condition was approved as disabled to tell them I'm entitled to disability too, and it will go back to my application date". (Another person said "just wait for approval on SSI, and have them do SSDI also.) I also verified this information with my caseworker on Oct. 15th, when I was also told they got my reconsideration to the team and it would be about 120 days before a decision from them.
February 1999 received the notice of disapproved claim. The reasons were inconsistent with what was actually in my medical records, so I filed for a hearing by an Administrative Law Judge, and submitted even more information about my disease as well as noting each report and letter with inaccuracies.
April 1999 called customer service again to verify number of quarters and to make sure the judge would be looking at both claims, for SSI and SSDI since I never heard back after calling for the appt in October 1998. Was told everything was fine.
July 6, 1999 received appointment letter for Disability for August 3, 1999. When I received this letter, I called to verify that this will go back to the original filing date of May 1998, and was told "Yes, it will." I also told them on the 22nd I'd go in front of the Judge about it.
July 22, 1999 day of the hearing with the Administrative Law Judge. APPROVED and found completely disabled. When I got home, I called the customer service # again to have them verify that the decision would be for SSDI and SSI. She said yes, that I should be approved for both and paid to 6/97 for SSDI and to 6/98 for SSI. She said the onset date in their file is 12/31/96.
August 3, 1999 had telephone interview with Mrs. Gunn (? name) who took the disability applications for my children and myself. I also received a letter dated Aug. 3, 1999 asking for another telephone appointment on Aug. 24, 1999 to verify eligibility for the SSI I was just approved for, and to determine monthly amounts due.
August 4, 1999 received a telephone call from Julie Baker that informed me that the Judge was only given a SSI application to consider. Because of that, he made the disability determination that the disability date was the date of the application, May 18, 1998 (which is standard). Repeatedly, I called and verified that he would have that SSDI application, and repeatedly I was told we would. So now I'm told that the judge's decision can not be used and they need a new medical determination for SSDI, and that I have to "prove with enough medical evidence significant enough to prove severity of disability by March 1997" (when eligibility for benefits ended after not being able to work anymore). And that a new determination could effect my continuing eligibility. Also that if I'm unable to prove disability by 3/97, will be ineligible because not enough quarters. Basically, I have to start the entire SSDI process over again because the judge wasn't given the application to consider. I asked if there was anything I could do about this since I had checked so many times to make sure this very thing did not happen. I even called the judge's office back and ask if he could re-review the file for a disability date back another 14 months. They said no, it had to go back through the process. I asked if there was anyone I could talk to about what happened and fix it, and they said there was nobody.
So on August 4, 1999, I also called the customer service # and talked to Miss Sanders. She said that if they request a medical determination it is NOT a new application, would just be an addition to their information for the additional time disabled. No new application, benefits do not start from this application.
August 7, 1999 received a letter from Julie Baker telling me that when Mrs. Gunn took my applications for disability benefits, she had not read the Administrative Law Judges decision and didn't know the wrong onset date was used. It also says that it is unlikely I'll be able to prove my disability by 3/97 with enough medical proof to be eligible, but I did correct the inaccuracies in her letter and submitted a copy back to the file - about medical records and # of work quarters, and the reviewing of my information.
August 19, 1999 filed a new SSDI application, supplying information only prior to 3/97 requested by Julie Baker.
November 2, 1999 received notice of Disapproved Claim. Disapproved because I was not disabled under their rules. They said they considered my statements, medical records, and how condition affects work - they say there is no condition that would have limited the ability to work.
December 15, 1999 filed another Request for Reconsideration because I definitely was disabled before 3/97.
April 2000 I called to check the status of the Reconsideration and was told my file had been requested for Quality Review, and would be sent to the Quality Review Board, so there would be no decision on the reconsideration.
November 2000 I called to check the status, and the computer has not been updated since April 25th; so I'm figuring the decision is still with the Quality Review Board. Which led me to write you this letter and see if you can help me understand why all this is happening, and to assist you in understanding what's been happening with this case.
I look forward to your reply. Do not hesitate to contact me if you need further information. Thank you for your help.
(A couple of days later, actually on the same day both letters arrived, one from the SSA and one from Tom Tancredo. I finally received the other reconsideration denial so now I can FINALLY apply for an Administrative Law Hearing again. The other was a form with a release of information thing I have to send back to my Congressman so he can look into this.)
Shewwwwwwwwwwww
Amazing.
And I'd Love to help anyone else!
Love you all!
icnTerri
mailto:[email protected][email protected]</A>

To whom it may concern at the Quality Review Board (and Congressman Tancredo),
I am writing this letter because I was so happy to hear my file was going to be reviewed by Quality Review. I'm so happy to finally have the opportunity to talk to someone and help clarify what's been happening with my disability application file since I applied in May 1998. Following are the sequence of events according to my records:
May 18, 1998, I phoned for an appointment to apply for Disability, and Supplemental Security Income. The appointment is set for June 15, 1998.
June 15, 1998 at appointment, received denial for SSDI when history of work quarters was pulled up and it didn't show enough to qualify for disability because my 1996 income was not listed with the IRS. They showed I was 4 quarters short from 1987-1997. Went ahead with SSI application. Contacted the IRS and had the 1996 income problem fixed, and do have enough quarters.
July 1998 had the independent exam, with none of my previous medical records requested because they noted "no insurance therefore no current sources".
August 1998 received the "Functional Capacity Assessment" which was supposed to be based on all evidence in file, and made using reasoned judgement. It was so completely inaccurate; I started providing more information about my very rare disease so they would have a better understanding of it, and providing more copies of all my medical records.
October 6,1998 (Aug. received denial for SSI) filed a Request for Reconsideration. October 29, 1998, I went into the SS office with my proof from the IRS that the 1996 income was added to my record and tried to submit a copy of those for the SSDI claim, and asked whether I needed a new application for that, or what to do. I was told I'd have to call for an appt. to submit that paper.
November 25, 1998 I called customer service at the 1-800# to verify whether I needed to fill out a new application for SSDI since the IRS had recently corrected my record to reflect 1996 income. She checked, and saw that I did have 25 quarters, and did qualify for SSDI. She also said I did not need a new application, but "when my condition was approved as disabled to tell them I'm entitled to disability too, and it will go back to my application date". (Another person said "just wait for approval on SSI, and have them do SSDI also.) I also verified this information with my caseworker on Oct. 15th, when I was also told they got my reconsideration to the team and it would be about 120 days before a decision from them.
February 1999 received the notice of disapproved claim. The reasons were inconsistent with what was actually in my medical records, so I filed for a hearing by an Administrative Law Judge, and submitted even more information about my disease as well as noting each report and letter with inaccuracies.
April 1999 called customer service again to verify number of quarters and to make sure the judge would be looking at both claims, for SSI and SSDI since I never heard back after calling for the appt in October 1998. Was told everything was fine.
July 6, 1999 received appointment letter for Disability for August 3, 1999. When I received this letter, I called to verify that this will go back to the original filing date of May 1998, and was told "Yes, it will." I also told them on the 22nd I'd go in front of the Judge about it.
July 22, 1999 day of the hearing with the Administrative Law Judge. APPROVED and found completely disabled. When I got home, I called the customer service # again to have them verify that the decision would be for SSDI and SSI. She said yes, that I should be approved for both and paid to 6/97 for SSDI and to 6/98 for SSI. She said the onset date in their file is 12/31/96.
August 3, 1999 had telephone interview with Mrs. Gunn (? name) who took the disability applications for my children and myself. I also received a letter dated Aug. 3, 1999 asking for another telephone appointment on Aug. 24, 1999 to verify eligibility for the SSI I was just approved for, and to determine monthly amounts due.
August 4, 1999 received a telephone call from Julie Baker that informed me that the Judge was only given a SSI application to consider. Because of that, he made the disability determination that the disability date was the date of the application, May 18, 1998 (which is standard). Repeatedly, I called and verified that he would have that SSDI application, and repeatedly I was told we would. So now I'm told that the judge's decision can not be used and they need a new medical determination for SSDI, and that I have to "prove with enough medical evidence significant enough to prove severity of disability by March 1997" (when eligibility for benefits ended after not being able to work anymore). And that a new determination could effect my continuing eligibility. Also that if I'm unable to prove disability by 3/97, will be ineligible because not enough quarters. Basically, I have to start the entire SSDI process over again because the judge wasn't given the application to consider. I asked if there was anything I could do about this since I had checked so many times to make sure this very thing did not happen. I even called the judge's office back and ask if he could re-review the file for a disability date back another 14 months. They said no, it had to go back through the process. I asked if there was anyone I could talk to about what happened and fix it, and they said there was nobody.
So on August 4, 1999, I also called the customer service # and talked to Miss Sanders. She said that if they request a medical determination it is NOT a new application, would just be an addition to their information for the additional time disabled. No new application, benefits do not start from this application.
August 7, 1999 received a letter from Julie Baker telling me that when Mrs. Gunn took my applications for disability benefits, she had not read the Administrative Law Judges decision and didn't know the wrong onset date was used. It also says that it is unlikely I'll be able to prove my disability by 3/97 with enough medical proof to be eligible, but I did correct the inaccuracies in her letter and submitted a copy back to the file - about medical records and # of work quarters, and the reviewing of my information.
August 19, 1999 filed a new SSDI application, supplying information only prior to 3/97 requested by Julie Baker.
November 2, 1999 received notice of Disapproved Claim. Disapproved because I was not disabled under their rules. They said they considered my statements, medical records, and how condition affects work - they say there is no condition that would have limited the ability to work.
December 15, 1999 filed another Request for Reconsideration because I definitely was disabled before 3/97.
April 2000 I called to check the status of the Reconsideration and was told my file had been requested for Quality Review, and would be sent to the Quality Review Board, so there would be no decision on the reconsideration.
November 2000 I called to check the status, and the computer has not been updated since April 25th; so I'm figuring the decision is still with the Quality Review Board. Which led me to write you this letter and see if you can help me understand why all this is happening, and to assist you in understanding what's been happening with this case.
I look forward to your reply. Do not hesitate to contact me if you need further information. Thank you for your help.
(A couple of days later, actually on the same day both letters arrived, one from the SSA and one from Tom Tancredo. I finally received the other reconsideration denial so now I can FINALLY apply for an Administrative Law Hearing again. The other was a form with a release of information thing I have to send back to my Congressman so he can look into this.)
Shewwwwwwwwwwww

Amazing.
And I'd Love to help anyone else!
Love you all!
icnTerri
mailto:[email protected][email protected]</A>
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