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Requalification for SSDI

Forums General Melanoma Community Requalification for SSDI

  • Post
    Debbie Dietz
    Participant
      I am stage IV and up for review with SSDI. I have been on SSDI since 9/07. After multiple surgeries and 4 clinical trials (GP100 vaccine, IL-2 and gene therapy trial all at NIH and then Ipi, here in Chicago) I am in remission and have been since 8/08. While the Ipi caused life-threatening complications for me I am now left only with Type 1 diabetes and thyroid disease as a result of the drug.. Also, because it is a non-FDA approved drug, no one can tell me how long the remission will last.

      Does anyone have any tips on how to present my case to SS? I have used the search engine here and read the posts regarding SSDI. I have called the number provided here (1-866-673-6460) and spoken with a cancer social worker. Her only advice was to contact http://www.cancerlegalresourcecenter.org, which I have done and am awaiting a response. If anyone here has any suggestions on wording, etc. for the paperwork involved, I would greatly appreciate it.

      Thanks

      Debbie

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    • Replies
        Jerry from Cape Cod
        Participant

          HI Debbie,

          You've been disease free since 8/08.  You don't say if you are physically able to work or not.  If you're asking if we know of any way to decieve the government I'm not interested or sympathetic.

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          Jerry from Cape Cod
          Participant

            HI Debbie,

            You've been disease free since 8/08.  You don't say if you are physically able to work or not.  If you're asking if we know of any way to decieve the government I'm not interested or sympathetic.

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              Debbie Dietz
              Participant
                Wow…..now I remember why I don’t post on this board. I chose not to bore you all with all of the details regarding the last 4 years- I was just looking for some advice- which I have seen others do on this board and thought that was the purpose of this board. You are a very bitter person, whoever you are. Obviously, I came to the wrong place.

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                Debbie Dietz
                Participant
                  Wow…..now I remember why I don’t post on this board. I chose not to bore you all with all of the details regarding the last 4 years- I was just looking for some advice- which I have seen others do on this board and thought that was the purpose of this board. You are a very bitter person, whoever you are. Obviously, I came to the wrong place.

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                  lhaley
                  Participant

                    Debbie,

                    Please don't let one A… stop you from posting!  If you are stage IV melanoma than you should be eligible for SSDI.  THis is a disease that won't go away as we unfortunately know.  For many just the stress of  9-5 job is just too much. Will we live long enough to reach retirement age?  I hope so but……

                    I for one don't know what tomorrow brings. I have decided to destress my life as much as possible. For some, working occupies their minds. 

                    Debbie, I remember a post between Charlie S and Amy B a few years ago where they talked about putting on the codes for melanoma on the paperwork.  Have all of your paperwork in order. How often you still have scans ect.

                    You have enough stress in your life, like we all do. This [email protected]#$@ didn't need to post this way to you.

                    Keep fighting,

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                    lhaley
                    Participant

                      Debbie,

                      Please don't let one A… stop you from posting!  If you are stage IV melanoma than you should be eligible for SSDI.  THis is a disease that won't go away as we unfortunately know.  For many just the stress of  9-5 job is just too much. Will we live long enough to reach retirement age?  I hope so but……

                      I for one don't know what tomorrow brings. I have decided to destress my life as much as possible. For some, working occupies their minds. 

                      Debbie, I remember a post between Charlie S and Amy B a few years ago where they talked about putting on the codes for melanoma on the paperwork.  Have all of your paperwork in order. How often you still have scans ect.

                      You have enough stress in your life, like we all do. This [email protected]#$@ didn't need to post this way to you.

                      Keep fighting,

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                      Debbie Dietz
                      Participant
                        Thank you for the response and the suggestions. I am not sure what is wrong with that poster to suggest that I would try to deceive the govt merely because I was asking for advice.! SS does not base their decision on only the paperwork that I fill out- they contact each and every one of my doctors for medical records before reaching their decision- which is the way it should be, in my opinion. Thanks again!

                        Debbie

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                        Debbie Dietz
                        Participant
                          Thank you for the response and the suggestions. I am not sure what is wrong with that poster to suggest that I would try to deceive the govt merely because I was asking for advice.! SS does not base their decision on only the paperwork that I fill out- they contact each and every one of my doctors for medical records before reaching their decision- which is the way it should be, in my opinion. Thanks again!

                          Debbie

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                        Kim K
                        Participant

                          Congrats on being NED!  Fortunately I am also in the same boat but decided to go back to work.  Regardless stage IV mel is and will always be an automatic qualifier for SSDI.  Just present your records to state that for some reason you didn't revert to a lower stage – lol!  I wish….  If for some quirk of nature you are denied, appeal the decision and you should be approved.  Just because you are NED isn't reason enough to be declined for SSDI.  You have been through Heck and back to be where you are today.  If you feel you still need SSDI then by all means take it, that is what it is there for.  That is what I was told by my case worker.

                          As for A…… Try not to take things personally.  Perhaps A just lost a loved one and can't bear to read about someone in your situation?  Perhaps someone tee tee'd in their cornflakes?  I am sure you realize how out of line the response was and in general how supportive this community is of each other.  We all have our bad days and I am sorry you were the target of such a response.  Yes, unfortunately there are those out there who don't realize the impact mel has on us if we aren't under "active" care, using a wheelchair, or have chemo hair.  We all know it can come back and devour us within weeks if it chose to do so.  We are NEVER cured of this damned disease at our stage….

                          Many have been in your situation, you can search the archives.  Best of luck to you.

                          (Cyber hugs)

                          Kim

                          (Hoping my scans next week are still NED)

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                          Kim K
                          Participant

                            Congrats on being NED!  Fortunately I am also in the same boat but decided to go back to work.  Regardless stage IV mel is and will always be an automatic qualifier for SSDI.  Just present your records to state that for some reason you didn't revert to a lower stage – lol!  I wish….  If for some quirk of nature you are denied, appeal the decision and you should be approved.  Just because you are NED isn't reason enough to be declined for SSDI.  You have been through Heck and back to be where you are today.  If you feel you still need SSDI then by all means take it, that is what it is there for.  That is what I was told by my case worker.

                            As for A…… Try not to take things personally.  Perhaps A just lost a loved one and can't bear to read about someone in your situation?  Perhaps someone tee tee'd in their cornflakes?  I am sure you realize how out of line the response was and in general how supportive this community is of each other.  We all have our bad days and I am sorry you were the target of such a response.  Yes, unfortunately there are those out there who don't realize the impact mel has on us if we aren't under "active" care, using a wheelchair, or have chemo hair.  We all know it can come back and devour us within weeks if it chose to do so.  We are NEVER cured of this damned disease at our stage….

                            Many have been in your situation, you can search the archives.  Best of luck to you.

                            (Cyber hugs)

                            Kim

                            (Hoping my scans next week are still NED)

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                              Debbie Dietz
                              Participant
                                Thanks for the perspective and good luck with your scans! :)

                                I like your saying and you are right: You can’t fix stupid!

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                                Debbie Dietz
                                Participant
                                  Thanks for the perspective and good luck with your scans! :)

                                  I like your saying and you are right: You can’t fix stupid!

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                                Charlie S
                                Participant

                                  Hi, Debbie

                                  Congrats on your disease being stable at this point, but as you well know, a remission of Stage IV Melanoma with a time span of 27 months is not an all clear by any means.  I am only saying this because what you will be faced with on Disability Review is that on the one hand you are happy to be in remission, and on the other, you have to convince Social Security that you are not yet stable and are not able to return to work.  That is at direct odds with the hope that all of us at Stage IV hold dear…….we don't want to be defined as a disease,we want to have a life beyond disease, but the complexity of the disease itself requires us to be vigilant and protective. beyond pigeon-holed statistics.

                                  As a side note to the Anon Poster, it would be a good idea for that person to seek a medical evaluation for recto-cranial inversion………………that is to say being in the state of having ones head up ones ass. 

                                  I am including a link to a site that is written BY  Lawyers FOR  Lawyers in lay terms  to shed some light on the process and the thinking behind Disability Reviews, I would urge you to read it carefully so you can get a working knowledge of the Review process.

                                  I am not a lawyer, nor am I giving legal advice, but I have been through three reviews and what follows are my thoughts and experiences with those.

                                  In your mind, heart and soul you must truly decide within yourself if you are or are not , able and willing to return to work in your previous capacity because if you can not convince yourself, you will not be able to convince anyone else.

                                  What is NOT mentioned in the link is that although SSDI is a Federal program, the review  is initially evaluated/handled on a state basis and forwards a recommendation to SS which then makes a final determination.

                                  .  In my State , SS kicks the review process to the Department of Vocational Rehabilitation, your State may have a similar agency.  As a result, there are 50 different State level standards of evaluation, which leaves lots of room for interpretation.

                                  Your doctor schedules, lab schedules, scan schedules all come into play.  There is also a form that is sent to your Attending that will probably have three boxes and they check one.

                                  These boxes are:  1) Improvement expected  2) Improvement possible  )Improvement not expected.  Which box your Doc checks is critical.

                                  Disability Law is complex, but hope this information helps.

                                  Cheers,

                                  Charlie S

                                  http://www.jamesdisabilitylaw.com/continuing-disability-reviews.htm

                                   

                                   

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                                  Charlie S
                                  Participant

                                    Hi, Debbie

                                    Congrats on your disease being stable at this point, but as you well know, a remission of Stage IV Melanoma with a time span of 27 months is not an all clear by any means.  I am only saying this because what you will be faced with on Disability Review is that on the one hand you are happy to be in remission, and on the other, you have to convince Social Security that you are not yet stable and are not able to return to work.  That is at direct odds with the hope that all of us at Stage IV hold dear…….we don't want to be defined as a disease,we want to have a life beyond disease, but the complexity of the disease itself requires us to be vigilant and protective. beyond pigeon-holed statistics.

                                    As a side note to the Anon Poster, it would be a good idea for that person to seek a medical evaluation for recto-cranial inversion………………that is to say being in the state of having ones head up ones ass. 

                                    I am including a link to a site that is written BY  Lawyers FOR  Lawyers in lay terms  to shed some light on the process and the thinking behind Disability Reviews, I would urge you to read it carefully so you can get a working knowledge of the Review process.

                                    I am not a lawyer, nor am I giving legal advice, but I have been through three reviews and what follows are my thoughts and experiences with those.

                                    In your mind, heart and soul you must truly decide within yourself if you are or are not , able and willing to return to work in your previous capacity because if you can not convince yourself, you will not be able to convince anyone else.

                                    What is NOT mentioned in the link is that although SSDI is a Federal program, the review  is initially evaluated/handled on a state basis and forwards a recommendation to SS which then makes a final determination.

                                    .  In my State , SS kicks the review process to the Department of Vocational Rehabilitation, your State may have a similar agency.  As a result, there are 50 different State level standards of evaluation, which leaves lots of room for interpretation.

                                    Your doctor schedules, lab schedules, scan schedules all come into play.  There is also a form that is sent to your Attending that will probably have three boxes and they check one.

                                    These boxes are:  1) Improvement expected  2) Improvement possible  )Improvement not expected.  Which box your Doc checks is critical.

                                    Disability Law is complex, but hope this information helps.

                                    Cheers,

                                    Charlie S

                                    http://www.jamesdisabilitylaw.com/continuing-disability-reviews.htm

                                     

                                     

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                                      Debbie Dietz
                                      Participant
                                        Charlie: Thank you so much for taking the time to respond. I have already started to review the website and it is just what I needed to become more informed and to understand better what I might be facing. I think that the website could be useful to a lot of people here- except for the Anon poster because “having one’s head up their ass”, unfortunately, is not a qualifying condition. Thanks again!

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                                        Debbie Dietz
                                        Participant
                                          Charlie: Thank you so much for taking the time to respond. I have already started to review the website and it is just what I needed to become more informed and to understand better what I might be facing. I think that the website could be useful to a lot of people here- except for the Anon poster because “having one’s head up their ass”, unfortunately, is not a qualifying condition. Thanks again!

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                                          Charlie S
                                          Participant

                                            Your are correct, RCI is not  a qualifying condition, but melanoma is and here is the SS http://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13.03 link in support of that.

                                            Charlie S

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                                            Charlie S
                                            Participant

                                              Oops. even though I included the link for melanoma coding  at SSDI os 13.03, I should point out the coding numbers for melanoma that your doc (clinical) might use, which are in the 176 coding areas depending, so here is that link as well.

                                              http://www.mdguidelines.com/cancer-skin-melanoma/medical-codes

                                               

                                              These codings are important because they are used  in conjunction…………….okay, really this is all ! laugh

                                              Charlie

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                                              Debbie Dietz
                                              Participant
                                                Charlie: Once again, thank you. The information that you provided is extremely helpful, not only to me, but, I would think, to a lot of the people on this board. It is important to understand and know our rights!

                                                One thing that I did learn from a quick review of the websites that you provided: if, in fact, you are NED, Social Security allows at least 3 years, from the date of being absence of disease, to continue with disability benefits. Hopefully, I read that correctly.

                                                Debbie

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                                                Debbie Dietz
                                                Participant
                                                  Charlie: Once again, thank you. The information that you provided is extremely helpful, not only to me, but, I would think, to a lot of the people on this board. It is important to understand and know our rights!

                                                  One thing that I did learn from a quick review of the websites that you provided: if, in fact, you are NED, Social Security allows at least 3 years, from the date of being absence of disease, to continue with disability benefits. Hopefully, I read that correctly.

                                                  Debbie

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                                                  Charlie S
                                                  Participant

                                                    Oops. even though I included the link for melanoma coding  at SSDI os 13.03, I should point out the coding numbers for melanoma that your doc (clinical) might use, which are in the 176 coding areas depending, so here is that link as well.

                                                    http://www.mdguidelines.com/cancer-skin-melanoma/medical-codes

                                                     

                                                    These codings are important because they are used  in conjunction…………….okay, really this is all ! laugh

                                                    Charlie

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                                                    Charlie S
                                                    Participant

                                                      Your are correct, RCI is not  a qualifying condition, but melanoma is and here is the SS http://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13.03 link in support of that.

                                                      Charlie S

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                                                    LynnLuc
                                                    Participant

                                                      The bottom line is you are still diagnosed as stage4 melanoma and any onc will say long term survival is poor…( although we hope and pray otherwise)…sounds like a disgruntled person didn't get their disability…) and was giving you a hard time…other stages have a higher rate of survival…

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                                                      LynnLuc
                                                      Participant

                                                        The bottom line is you are still diagnosed as stage4 melanoma and any onc will say long term survival is poor…( although we hope and pray otherwise)…sounds like a disgruntled person didn't get their disability…) and was giving you a hard time…other stages have a higher rate of survival…

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                                                        NancyGM
                                                        Participant

                                                          Debbie, I am in the same boat you are except I am in the midst of the appeal process which has dragged out for months. I have been NED for 3 years stage IV. If you would like to e-mail me I can tell you about all the research I have done (thank you, Charlie S. !), the contacts I have made, the letter my oncologist wrote and the conversations I have had with the person processing my appeal.

                                                          I took for granted that a stage IV diagnosis would make me eliglble for life and that I could go back to work part time and keep my medicare/medicaid and SSDI. It has been very confusing and difficult, but I think there may finally be some light at the end of the tunnel…best of luck to you and let me know how it goes.

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                                                          NancyGM
                                                          Participant

                                                            Debbie, I am in the same boat you are except I am in the midst of the appeal process which has dragged out for months. I have been NED for 3 years stage IV. If you would like to e-mail me I can tell you about all the research I have done (thank you, Charlie S. !), the contacts I have made, the letter my oncologist wrote and the conversations I have had with the person processing my appeal.

                                                            I took for granted that a stage IV diagnosis would make me eliglble for life and that I could go back to work part time and keep my medicare/medicaid and SSDI. It has been very confusing and difficult, but I think there may finally be some light at the end of the tunnel…best of luck to you and let me know how it goes.

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                                                            djpayn
                                                            Participant

                                                              Debbie, i hope that you are able to find the information you are looking for.  dont know if you developed lymphedema due to your melanoma surgeries, but that is another condition disability considers when re-evaluating.

                                                               

                                                              on to the anonymous poster –  i HATE that there is an option to post cowardly hurtfull remarks on a support site.   I understand the need for it in some ircumstances, but not for people just to be hateful.

                                                               

                                                              the people who make comments like that are, in my opinion, not only cowards for hiding who they are, but miserable little people. i realize they may be under alot of stress or have just lost a loved one….but that does not give them the right.

                                                               

                                                              im so glad that you got positive helpful responses to your question in the end, but i feel the same way you do about posting here anymore,

                                                              why bother when youre going to get met with some rediculously hateful comment.   i used to post all the time but now, very rarely. i come to check up on people i care about but thats about it anymore.   its a shame too, because a new person just being diagnosed who is looking for help would never return…and there are some amazing people here with an enormous amount of information to share.

                                                               

                                                              just my 2 cents…..

                                                               

                                                              good luck on your review Debbie

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                                                              djpayn
                                                              Participant

                                                                Debbie, i hope that you are able to find the information you are looking for.  dont know if you developed lymphedema due to your melanoma surgeries, but that is another condition disability considers when re-evaluating.

                                                                 

                                                                on to the anonymous poster –  i HATE that there is an option to post cowardly hurtfull remarks on a support site.   I understand the need for it in some ircumstances, but not for people just to be hateful.

                                                                 

                                                                the people who make comments like that are, in my opinion, not only cowards for hiding who they are, but miserable little people. i realize they may be under alot of stress or have just lost a loved one….but that does not give them the right.

                                                                 

                                                                im so glad that you got positive helpful responses to your question in the end, but i feel the same way you do about posting here anymore,

                                                                why bother when youre going to get met with some rediculously hateful comment.   i used to post all the time but now, very rarely. i come to check up on people i care about but thats about it anymore.   its a shame too, because a new person just being diagnosed who is looking for help would never return…and there are some amazing people here with an enormous amount of information to share.

                                                                 

                                                                just my 2 cents…..

                                                                 

                                                                good luck on your review Debbie

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                                                                  Debbie Dietz
                                                                  Participant
                                                                    This board has been a wealth of information for me over the last 4.5 years and, while I rarely post, I still come here several times a week to see what is going on. BY FAR, the positive responses that I have received to this post have greatly outweighed the one negative response and, for that I would like to say thank you! I choose to ignore and feel sorry for the ANON poster- one bad apple doesn’t spoil the whole bunch. Thanks!

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                                                                    Debbie Dietz
                                                                    Participant
                                                                      This board has been a wealth of information for me over the last 4.5 years and, while I rarely post, I still come here several times a week to see what is going on. BY FAR, the positive responses that I have received to this post have greatly outweighed the one negative response and, for that I would like to say thank you! I choose to ignore and feel sorry for the ANON poster- one bad apple doesn’t spoil the whole bunch. Thanks!

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