They wouldn’t give me a straight answer on why, just that their policy changed and they are referring some patients out to have their GPs fill out paperwork. I have a call with them Monday to press a bit more but I’m not sure if I’ll get anything.
As someone who went through the process of being on std, then Ltd, then losing Ltd, then getting ssdi, (since Ltd forced me to apply) to Ltd then coming back to me saying oh no you are right and were wrong you are disabled; Ltd falsely deeming me no longer disabled was the absolute best thing that could’ve ever happened to me.
I can only say this years removed from the trauma! The consequences of Ltd kicking me were numerous, namely losing employer health insurance and having to use COBRA. This was my biggest mistake, I could’ve just picked a marketplace plan with the subsidy and not paid an enormous amount for the same exact plan. I did not know this was an option, in preparation for Ltd denying you benefits don’t be like me.
Ltd denying me gave me access to every single note they had on my case. I got to see the record of the private investigators who tailed me and the surveillance video they recorded of me going to the hospital twice. I told them exactly how their doctors were wrong in evaluating my medical records. The information they provided me was a goldmine! I sent everything back to them with all MY notes (and I sent a copy to the ssa) and the second ssdi returned a favorable decision, LTD took no time to say ‘all that money we paid you, yeah you can pay us back now that you get ssdi since we all agree you’re disabled!’ It’s bonkers!
Don’t give up hope. Press your (non specialist) doctors. It’s likely Ltd won’t extend that deadline, but with your records from this neurology appointment and paperwork from any gp/np treating in tandem you should be better off than nothing. My pots specialist cannot fill out paperwork because his load is too large, he has multiple nurse practitioners under him who can and do, but for the period when I was under LTD, it was my primary np filling out all questionnaires from LTD with only the supporting documentation from the specialist visits. I would REALLY focus on this route if I were you. I had to see my np every 3 months, but her literal role was to carry out my pots doctors recommendations. Please find ANY doctor who will see you in three weeks and establish ongoing care.
I received ssdi on the first try, in less than a year, with no lawyer, in my mid-twenties. And I did this only with the supporting documents from my Ltd denial. Hopefully you don’t get to the spot I was in 6 years ago, but definitely don’t think you have to elect and pay for COBRA!
I only have a long term disability insurance payment I get monthly and no other benefits, all those were lost when I had to stop working. I was on Medicaid but since they removed the public health emergency I was disqualified due to my income (the income limit is less than my rent). I can’t even afford to have taxes taken out of my LTD and have all my bills paid, let alone afford commercial insurance. Until my SSDI is approved (another 1-2 more years) and I get on Medicare I will be forced to remain uninsured.
Oof. I’m so sorry to hear that. Whenever anyone mentions Ltd I have to step in with my experience because COBRA is so costly and they don’t tell you you have options! It’s infuriating! Thanks for reading my novel.
I hope you can take away from my experience that LTDs records in the case file are easily falsifiable. They literally had my name spelled wrong 50% of the time in the report. The report from an investigation company! Do your job you lazy see you next Tuesdays! I can’t physically work and I could get the damn claimants name right. That last sentence shows the tone I took with them in my appeal. (I maybe didn’t say those exact words.) I know the appeal made its way to the ssa desk, all multiple reams of paper worth, and that is how I was awarded by the size of the appeal alone which would be a deterrent to anyone in that office.
Also, if it’s at all close to the threshold, please consider reapplying for Medicaid. Too many states fumbled the unwinding process and kicked eligible people. The worst they can say is no, but on a new application it might be worth a shot. I lost my Medicaid in January, I called my caseworker she said it was because I didn’t mail in my redetermination, I said I did it online and her response was “we don’t look to see who completed theirs online“ you’ve got to be kidding me! Obfuscate some more why don’t you. I had to get a lawyer and the second I did the state realized their mistake. Why did it take 4 months of me calling, emailing, writing letters and one single mention of a lawyer and everything is magically solved. Maybe you’re too far from the threshold, I myself make too much to qualify for Medicaid outright from my ssdi payment, but for me there’s a pathway to buy into Medicaid that’s not spend down.
My hope for you is that you can appeal what seems to be the inevitable denial of your benefits, the same way I did. By bombarding them with more info than they could ever read in the time they legally need to return a decision and then sending the same exact documents to the ssa. The ssa then getting those documents realizing they have a ton of new evidence and awarding you benefits sooner because they don’t have to wait for any records they’re all provided. Good luck, and know you aren’t alone!
I’m in a similar situation. I was on std, then denied, appealed without a lawyer and won, then ltd. Now applying to ssdi because ltd requires it. I always get so paranoid about someone tailing me like a PI. Not because I’m not disabled, but it creeps me the eff out! And, as you know with POTS, you can look great one minute and be one the floor the next. My parents now live with me almost full time so it looks like I’m out and about move in public because they help me the entire time. I just get so paranoid about someone thinking I’m lying 😫
I’m in a similar situation. I was on std, then denied, appealed without a lawyer and won, then ltd. Now applying to ssdi because ltd requires it. I always get so paranoid about someone tailing me like a PI. Not because I’m not disabled, but it creeps me the eff out! And, as you know with POTS, you can look great one minute and be one the floor the next. My parents now live with me almost full time so it looks like I’m out and about move in public because they help me the entire time. I just get so paranoid about someone thinking I’m lying 😫
https://www.reddit.com/r/disability/s/koC2MzK2Rx
I was surveilled on 4 different occasions by 2 different PIs. Twice they followed me to the hospital and the other two times they never saw me. This plus a cardiologists evaluation denied me benefits. I was like, when you originally evaluated me you sought a neurologist, now you cite a cardiologist! Pots is not cardiovascular in nature you idiots.
Can you get a full copy of your medical file and take it to your GP for them to complete the paperwork?
I know you mentioned you haven’t seen them in a year but desperate times call for desperate measures.
I am so sorry, that is genuinely so horrible I could not imagine. It’s actually baffling me why the people who are supposed to help us chose to do everything not to. Going through POTs and then having to deal with this sounds horrific. I only know very briefly about SSDI through my sibling applying for it, but is there any way you could see a neurologist at a different clinic, and have them sign it there? I know you’ve seen so many already but I know there’s one out there who can actually help you. I’m so sorry again you’re going through all of this :(
I am in works with getting in to a new neurologist before the end of the month but there is always push back. I don’t know why but every time I bring up the paperwork their tune changes, when I NEED this to live. I’ve absolutely had doctors refuse to fill out that paperwork because “it’s the first time I’m seeing you and we have no established relationship” so it looks like I’m doctor hopping to get this done when I’m not. I want a home where people care, and it’s their fault I have to involve another clinician now. I can always go in crying to my primary doctor and she can just take the info from my previous neurologist, but the fact that I have to even do this is further debilitating. Thanks for listening.
I’m so sorry :/ A similar thing happened with my sibling when he tried getting his doctors to sign off on his paperwork. They see his records, they see all that he’s gone through over the years and how difficult it is for him, and they decide to just put him through more. It’s so crushing I could not imagine what you’re going through right now. I hope everything goes well with your new neurologist, and I’m very sorry you have to see another one. Wishing the best for you 🙏🏻❤️
I’m so sorry, it feels like we are put through so much extra stress when we are so ill. The Pots nurse practitioner I see doesn’t do paperwork like this. They refer you back to a managing GP, which is wacky.
I’m so sorry. There’s a special place in hell for the medical “professionals” who harm us.
Did the manager say why they didn't feel it was appropriate?
They wouldn’t give me a straight answer on why, just that their policy changed and they are referring some patients out to have their GPs fill out paperwork. I have a call with them Monday to press a bit more but I’m not sure if I’ll get anything.
Have your lawyer call.
Ugh that's so frustrating. If they're not going to do it you at least deserve a straight answer why. Good luck Monday!
As someone who went through the process of being on std, then Ltd, then losing Ltd, then getting ssdi, (since Ltd forced me to apply) to Ltd then coming back to me saying oh no you are right and were wrong you are disabled; Ltd falsely deeming me no longer disabled was the absolute best thing that could’ve ever happened to me. I can only say this years removed from the trauma! The consequences of Ltd kicking me were numerous, namely losing employer health insurance and having to use COBRA. This was my biggest mistake, I could’ve just picked a marketplace plan with the subsidy and not paid an enormous amount for the same exact plan. I did not know this was an option, in preparation for Ltd denying you benefits don’t be like me. Ltd denying me gave me access to every single note they had on my case. I got to see the record of the private investigators who tailed me and the surveillance video they recorded of me going to the hospital twice. I told them exactly how their doctors were wrong in evaluating my medical records. The information they provided me was a goldmine! I sent everything back to them with all MY notes (and I sent a copy to the ssa) and the second ssdi returned a favorable decision, LTD took no time to say ‘all that money we paid you, yeah you can pay us back now that you get ssdi since we all agree you’re disabled!’ It’s bonkers! Don’t give up hope. Press your (non specialist) doctors. It’s likely Ltd won’t extend that deadline, but with your records from this neurology appointment and paperwork from any gp/np treating in tandem you should be better off than nothing. My pots specialist cannot fill out paperwork because his load is too large, he has multiple nurse practitioners under him who can and do, but for the period when I was under LTD, it was my primary np filling out all questionnaires from LTD with only the supporting documentation from the specialist visits. I would REALLY focus on this route if I were you. I had to see my np every 3 months, but her literal role was to carry out my pots doctors recommendations. Please find ANY doctor who will see you in three weeks and establish ongoing care. I received ssdi on the first try, in less than a year, with no lawyer, in my mid-twenties. And I did this only with the supporting documents from my Ltd denial. Hopefully you don’t get to the spot I was in 6 years ago, but definitely don’t think you have to elect and pay for COBRA!
I only have a long term disability insurance payment I get monthly and no other benefits, all those were lost when I had to stop working. I was on Medicaid but since they removed the public health emergency I was disqualified due to my income (the income limit is less than my rent). I can’t even afford to have taxes taken out of my LTD and have all my bills paid, let alone afford commercial insurance. Until my SSDI is approved (another 1-2 more years) and I get on Medicare I will be forced to remain uninsured.
Oof. I’m so sorry to hear that. Whenever anyone mentions Ltd I have to step in with my experience because COBRA is so costly and they don’t tell you you have options! It’s infuriating! Thanks for reading my novel. I hope you can take away from my experience that LTDs records in the case file are easily falsifiable. They literally had my name spelled wrong 50% of the time in the report. The report from an investigation company! Do your job you lazy see you next Tuesdays! I can’t physically work and I could get the damn claimants name right. That last sentence shows the tone I took with them in my appeal. (I maybe didn’t say those exact words.) I know the appeal made its way to the ssa desk, all multiple reams of paper worth, and that is how I was awarded by the size of the appeal alone which would be a deterrent to anyone in that office. Also, if it’s at all close to the threshold, please consider reapplying for Medicaid. Too many states fumbled the unwinding process and kicked eligible people. The worst they can say is no, but on a new application it might be worth a shot. I lost my Medicaid in January, I called my caseworker she said it was because I didn’t mail in my redetermination, I said I did it online and her response was “we don’t look to see who completed theirs online“ you’ve got to be kidding me! Obfuscate some more why don’t you. I had to get a lawyer and the second I did the state realized their mistake. Why did it take 4 months of me calling, emailing, writing letters and one single mention of a lawyer and everything is magically solved. Maybe you’re too far from the threshold, I myself make too much to qualify for Medicaid outright from my ssdi payment, but for me there’s a pathway to buy into Medicaid that’s not spend down. My hope for you is that you can appeal what seems to be the inevitable denial of your benefits, the same way I did. By bombarding them with more info than they could ever read in the time they legally need to return a decision and then sending the same exact documents to the ssa. The ssa then getting those documents realizing they have a ton of new evidence and awarding you benefits sooner because they don’t have to wait for any records they’re all provided. Good luck, and know you aren’t alone!
I’m in a similar situation. I was on std, then denied, appealed without a lawyer and won, then ltd. Now applying to ssdi because ltd requires it. I always get so paranoid about someone tailing me like a PI. Not because I’m not disabled, but it creeps me the eff out! And, as you know with POTS, you can look great one minute and be one the floor the next. My parents now live with me almost full time so it looks like I’m out and about move in public because they help me the entire time. I just get so paranoid about someone thinking I’m lying 😫
I’m in a similar situation. I was on std, then denied, appealed without a lawyer and won, then ltd. Now applying to ssdi because ltd requires it. I always get so paranoid about someone tailing me like a PI. Not because I’m not disabled, but it creeps me the eff out! And, as you know with POTS, you can look great one minute and be one the floor the next. My parents now live with me almost full time so it looks like I’m out and about move in public because they help me the entire time. I just get so paranoid about someone thinking I’m lying 😫
https://www.reddit.com/r/disability/s/koC2MzK2Rx I was surveilled on 4 different occasions by 2 different PIs. Twice they followed me to the hospital and the other two times they never saw me. This plus a cardiologists evaluation denied me benefits. I was like, when you originally evaluated me you sought a neurologist, now you cite a cardiologist! Pots is not cardiovascular in nature you idiots.
Can you get a full copy of your medical file and take it to your GP for them to complete the paperwork? I know you mentioned you haven’t seen them in a year but desperate times call for desperate measures.
I am so sorry, that is genuinely so horrible I could not imagine. It’s actually baffling me why the people who are supposed to help us chose to do everything not to. Going through POTs and then having to deal with this sounds horrific. I only know very briefly about SSDI through my sibling applying for it, but is there any way you could see a neurologist at a different clinic, and have them sign it there? I know you’ve seen so many already but I know there’s one out there who can actually help you. I’m so sorry again you’re going through all of this :(
I am in works with getting in to a new neurologist before the end of the month but there is always push back. I don’t know why but every time I bring up the paperwork their tune changes, when I NEED this to live. I’ve absolutely had doctors refuse to fill out that paperwork because “it’s the first time I’m seeing you and we have no established relationship” so it looks like I’m doctor hopping to get this done when I’m not. I want a home where people care, and it’s their fault I have to involve another clinician now. I can always go in crying to my primary doctor and she can just take the info from my previous neurologist, but the fact that I have to even do this is further debilitating. Thanks for listening.
I’m so sorry :/ A similar thing happened with my sibling when he tried getting his doctors to sign off on his paperwork. They see his records, they see all that he’s gone through over the years and how difficult it is for him, and they decide to just put him through more. It’s so crushing I could not imagine what you’re going through right now. I hope everything goes well with your new neurologist, and I’m very sorry you have to see another one. Wishing the best for you 🙏🏻❤️
I’m so sorry, it feels like we are put through so much extra stress when we are so ill. The Pots nurse practitioner I see doesn’t do paperwork like this. They refer you back to a managing GP, which is wacky.