Trying to be an advocate for a friend, but it's so complicated!!! [View all]

Ugh. I hope some of you brilliant people can help or point me in the right direction.

I typed up a two-page summary of the situation -- it's really complex! -- but here are the highlights:

- 54-year-old living in NC, on disability since 2002 for two psychiatric diagnoses, including VERY severe OCD which is a huge hindrance in him now being willing to interact with SSI, along with a physical condition which I describe next, rendering him homebound.

- He definitely has not worked at all, that's not a concern re: re-evaluation. His diagnoses have not improved, and in addition he has developed a very severe and complex photophobia (extreme light sensitivity) condition which renders him not only homebound, but he is very limited, including can't look at a computer screen, phone screen, etc. It has also resulted in severe sleep disturbance. This developed in 2012 and he did seek treatment through several specialists but no diagnosis could be rendered. But there would be a trail showing him seeking treatment.

- He has NOT seen a psychiatrist nor has he been on medication since probably 2010. No medical documentation of his ongoing illness for which he first received disability.

- Over the last several years his 87-year-old mother, who lives in a different state, has evidently claimed him as a dependent. She has helped him with equipment for the photophobia, for example, and probably does help to some degree with basic living expenses not covered by SSI. His mother evidently did consult with someone (tax attorney, I think) about claiming him as a dependent and was told it was fine.

- In 2014 my friend heard something to the effect that if he gets any help at all, even from a family member, that makes him ineligible to receive SSI. He absolutely refuses to lie or fudge the truth or anything (which is obviously good), and when he heard this he asked to be removed from SSI. (I know, I know...it's so hard to get on it in the first place that that is almost unheard of.) It was more of an OCD reaction and developed into this huge fear of SSI. I mean, really. He's terrified of this entire situation now.

All of his attention quickly turned to a very traumatic situation for him given the above limitations: He was forced to move out of his apartment (they were renovating and raising rates tremendously). He had about eight months advance notice and they let him literally be the last resident to move out, but those eight months were full of so much drama I can't even tell you. The move itself finally happened in July of 2015, and that's when he got his first notice from SSI, in response to his 2014 request to cancel coverage.

- Long story short, SSI acknowledged his cancellation but never stopped sending checks. They did reduce his payment to cover overpayment. He has been simply frozen about what to do. He didn't even notify them of his move, which he fears will cause them to put him in jail. (Seriously paranoid about the whole process and has received less-than-helpful counsel over the years, with no attorney being willing to take him on as a client so that he can receive step-by-step guidance, not only about the SSI situation but what may happen if he comes off SSI...more on that below.)

- He received his first re-evaluation notification earlier this month, which has triggered having to make a decision about how to move forward. He is TERRIFIED of interacting with SSI. He knows that he will need an evaluation of sorts -- and they will surely do it in-home -- but is more inclined to disregard the re-evaluation notification and just let SSI lapse and discontinue benefits. He's an emotional mess about this, to say the least, and no one can do this for him. He is the one who has to undergo an evaluation. (His eye condition is painful and he literally can't look at anything, including human faces, for long. Very odd.)


IF HE SHOULD GO OFF SSI, and we assume that means Medicaid will be discontinued, here are his other huge concerns:


If he does get off of SSI and thus loses Medicaid, he will need to apply for coverage under the Affordable Care Act, which he believes (and was told) he could do because evidently his mother has listed him as a dependent for at least a few years (again, he has fear about how that may impact SSI and if they may come after him to repay something), so he could apply for coverage under her or something. I just don't know anything about how ACA works for adults who live in a state with no Medicaid expansion (NC) but who may be eligible for coverage under their parents' policy even if they live in a different state (WV).

HOWEVER, not knowing the legalities of any of these things makes him fear that if he applies to get on Obamacare, will that trigger red flags involved with his mom claiming him as a dependent over the last couple of years and him having been on SSI.


I told you, it's a hot mess. I continue to try to receive guidance by breaking down these various elements via Avvo.com, but it is like pulling teeth to get an SSI attorney to actually consult about this matter, even when offering to pay! I guess guidance isn't part of counsel; they only take on clients when there is a case against SSI in some way?

*sigh* Like I said, there's a two-page doc with more details but the long summary above hits the high points, I do believe.

Thanks for reading.