Notice of Continuing Disability Review

[okarol]

Jenna got a 12 page form to complete and return or "your Social Security and SSI benefits may stop."
They already took away her SSI when they determined (in a face to face meeting a month ago) that she has a small college fund that became her property when she turned 23. And they want her to pay back $1827 they overpaid (even though we reported the fund to them every time they sent a form for the last 3 years, I guess no one acted on it until now.) We are appealing the pay back, but it may be futile.
So this new form wants all her work history, hospital stays, doctor visits, counseling, medications, etc. Then their "doctors and other trained staff will decide if your condition has improved, and if you are still disabled under our rules."
It's tricky because although she has a transplant, it's in rejection and her kidney function has dropped again, GFR is 14. I suppose they may decide she does not qualify for disability (which I believe will also affect her eligibility for Medicare coverage??) She still has private insurance under our family plan.
They also may ask to be paid back what she received for Soc. Sec. since she turned 23 (3 years ago!!)
She's at the point where we need to be thinking about transplant in the future. But getting the process going and paid for may be hard with them working to unhook her from coverage.
Does anyone have any suggestions or guidance before we fill out all these forms? She's afraid she might say or do the wrong thing.
Thanks.

[Roxy]

I think there may be some loop holes or maybe more information you may be able to receive. I am not on social security anymore. I haven't been since after I went back to work after my transplant. However, I do still have Medicare. I automatically assumed that when I was 3years post op that medicare had ended, but they continued to bill me. I called three different times and spoke to three different people  over the course of 2 months explaining that I was post transplant and were they 100% sure I was still allowed to have medicare. I didn't want to risk having to pay anything back should they all of a sudden decide to change their mind. Each person gave me a general answer after researching that since I was on social security disability for a while that I was still eligible to continue my medicare for a certain number of months/years ( I think i have a few more years left, not sure though as I don't like pressing with too many questions as you never know when the "rules" change). Still not sure how accurate this loophole is.

I was looking at the social security website and under their eligibility information it looks like they do consider any complications with the transplant ( rejection episodes and anything else) as part of the continuing evaluation. I would  think it would be good to emphasize and make sure there is sufficient documentation of the rejection and and any complications. I'm sure you have already looked over the requirements and eligibility on the social security website but if not, it may help in what information to emphasize and not forget.

Not sure if this helps at all, but I hope all goes well and Jenna gets to keep her benefits!

[KarenInWA]

Karol, just an fyi regarding Medicare. I am not on SSDI, in fact, I signed a paper saying I don't need it. I do have Medicare as secondary coverage, it will be primary starting April 2014, then will be terminated Nov 2014. I signed that paper when I finally signed up for Medicare. They sent it to me.

I am currently on STD through my work. I am getting 100% coverage for the first 20 days I am out, then it will be 50% after that.
KarenInWA

[lmunchkin]

I have no idea Karol.  But I think it is a damn shame that good honest people have to suffer this idiot red tape in this country.  Like having a transplant is the answer to all your problems. They have no clue, do they?

Sending you prayers and luck with these idiots, like you have nothing else to do!

lmunchkin
 

[Sunny]

Disability all rests upon what the treating nephrologist or treating phycisians say about the disability. As long as you have a doctor stating Jenna is disabled from working due to kidney transplant complications or kidney disease,  then social security should continue her disability benefits. There is an Appeals process if her disability claim is denied. I hope it all works out for Jenna.

[okarol]

Thanks all! We have been avoiding the forms, but they have come again, this time with a 10 day deadline.
 

[jbeany]

Karol, I got reviewed last winter.  Technically, I was 18 months or so out from my transplant.  I filled everything in, and was honest about answers, but I certainly stressed my complications and my upcoming surgery to put my misplaced guts back on the inside.  I don't think they even contacted my doctor, not that he would have said anything other than the same "Hell no you can't go to work!" that he had told me.  I answered the "Are you working?" questions honestly - I wasn't, as per doctor's orders.  I, of course, didn't mention that I was going to school full time and volunteering, at least in the months before surgery was scheduled, but for that matter, I didn't really make that clear to the doc either.    (Easy for him to say rest and relax - he didn't have a future without health insurance to worry about.) I received a short form back that said my review had been dropped.  Of course, once I had the surgery and the endless complications, I'd have been qualified to be right back on anyhow.

So, my advice is answer like a politician - answer honestly, but spin it all in your favor!

[sullidog]

They are idiots! no one in that office/offices knows which ends up, I'm paying back an 11,000 bill that was not my fault and I didn't win my appeals so they take $85 out of my social security checks. Good luck!

[okarol]

The forms just kept on coming, requesting more info, asking about how she's feeling, is she working, how she spends her day, what her routine was, was she depressed. They also sent a 12 page form to be filled out by someone close to her, that knew her well, that could also give info about her energy level, her routine, her mood, so I completed it. UGH! So monotonous! Then she received 2 notices, mandating that she be available for an appointment at an internist and psychiatrist. Each notice threatened "Failure to complete requested forms or appear at mandated medical appointments with 10 days will result in termination of benefits."
As instructed, Jenna went to the internist appointment. It was in a dingy little office downtown, no pictures on the walls, seemed like a temporary office. There were 3 guys behind the desk, and after some time, she was called in. I waited for her and after a few minutes she came out, said the blood pressure cuff wasn't working. After more time they called her in again. While she was gone the patient sitting across from me was having trouble with the forms, spelling what his illness was, and asked his niece to help him. She spelled out "A-L-C-O-H-O-L-I-C."
Then Jenna came out in tears. She said they had tried 3 times to get a blood sample but were hurting her, and were unsuccessful. WTF?? I went up to the desk and said, "You should tell people they are going to have labs done! The letter she got did not say anything about labs!" I was particularly upset because Jenna had given 12 vials of blood the day before in a transplant evaluation. If we had know she was going to have labs too, we would have rescheduled. She's anemic! Hello!?! The guy behind the desk said, "We don't send the letters, Social Security does." We left, and as soon as we walked in the door at home, I called the SS office. i have never had an actual human answer the phone, usually it's just a voice mail, but this time I got lucky, Jenna's caseworker answered. I described the office, staff, procedure and how upset Jenna was. I asked why do they have to send her threatening letters, when they must know how stressful it is to be losing a transplanted kidney, facing dialysis, feeling tired and trying to keep up with the mountain of paperwork they require? To her credit, the case worker was sympathetic. She explained that the reason for all the forms and mandated appointments was because they were not receiving current records from her doctors at the transplant hospital. (Remember them, they took 9 month to list her?) Unbelievable. I asked what they were waiting for. Basically they needed her current labs (easy, she has them monthly, and we have copies) and doctors appt. notes (no problem, I emailed her neph and he faxed them over) and they had nothing from the therapist (and never would, the idiot was impossible to reach.)
The next day Jenna went to the same crummy office and met with the psychiatrist. He asked if she felt guilty for being sick. Jenna said yes, because it's so hard on her family. He said "It's not your fault." When Jenna told me this she said "Duh, does he think I don't know that??"
Anyway, 10 days later we get a notice, disability will continue, she passed, for now. They did say she will be under review again in the future.
Thanks jbeany, your advice "answer honestly, but spin it all in your favor!" made sense, and helped us get through the forms!

[jeannea]

That sounds horrible. Poor Jenna. I'm glad she has you to help her through it.

[jbeany]

Thanks jbeany, your advice "answer honestly, but spin it all in your favor!" made sense, and helped us get through the forms!

Glad to help!  I think getting caught in a lie can get in you big trouble with them.  Focusing more on one part of the truth than the other is a much better option.  It sometimes seems that they only think you qualify as disabled if every second of your day is miserable.  Any ability to do anything or enjoy anything is apparently frowned on, even if you collapse from exhaustion from the slightest bit of exertion. 

[sullidog]

social security is a joke, I don't think anyone in that office knows which ends up, and yeah they also lose paperwork that you send them.

[rfranzi]

Thanks jbeany, your advice "answer honestly, but spin it all in your favor!" made sense, and helped us get through the forms!

Glad to help!  I think getting caught in a lie can get in you big trouble with them.  Focusing more on one part of the truth than the other is a much better option.  It sometimes seems that they only think you qualify as disabled if every second of your day is miserable.  Any ability to do anything or enjoy anything is apparently frowned on, even if you collapse from exhaustion from the slightest bit of exertion.

Completely agree with the attitude, it is nearly illegal to be a human being, smile, or laugh. Lest we be called useless freeloaders.

[EugeneW]

Unfortunately, Social Security overpayments(http://www.socialsecuritydisability.tv/glossary/overpayment) are very common. They generally will ask you to pay it back. It isn't fair especially when they made the mistake.