Meds, Mind, Body & Benefits > Insurance, Benefits Programs & HIV

Working while on SSDI-bad idea

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I have long been an advocate for people who are on disability and want to work part-time to supplement their income. Well, not any longer.

Back at the end of July, I got a packet in the mail from Social Security, asking all kinds of questions about my job, saying they are doing a "work review."  So, I filled it out, and sent it back.  Then a couple months later (yes 2 months), they sent my employer a wage verification statement, and it turns out I was $24 over SGA last November.  My employer looked back at time sheets, and it turned out I was accidentally paid for a holiday (Veteran's Day), last November, which is what put me over.  So, I got a letter from my employer stating that fact and sent it to SSA.

Well, I just got a letter last week stating I was not due a check last November, so I'm going to have to pay that back.  And, they "may" cut my benefit off.  Now, I have only been working part-time, and had letters from my doctor and employer stating I cannot work full time.  But, when reading what info SSA sent, it stated a person can be cut off from even a part time job if SSA believes they are doing "substantial" work, even if the person does not go over SGA.

What I do is work at an ASO.  I am a case manager.  I have helped clients that want more schooling, or job training, to get into vocational rehabilitation.  Now, I'm debating on telling them all not to plan on working so they can keep their benefits without any issues.

My doctor believes I should stop working and volunteer, if it means I could keep the benefit.  See, my meds run around $50,000 a year since I have other issues besides AIDS.  That would be impossible to meet that expense, especially since I can barely work part time, let alone full time.  Plus cost of labs, doctor visits, my quarterly Cortisone injections for my knees, etc.

I have gotten ill last weekend worrying about this and being so stressed out.  My chest is tight and noisy, and my sinuses are plugged.  I believe it's just a virus, though, and am not too worried about it.  But, this shit with SSA keeps happening (those of you who know me will remember the time they said I owed them a lot of money for months I should not have gotten a check, when it turned out I did not owe them a lot). 

So, I am seriously thinking about quitting my job if it means I can keep my benefit, and volunteering.  This morning, in a few hours, I am going to the SSA office to see if anyone can make sense of this. 

To those I've told to go ahead and go back to work- I deeply apologize.  I guess SSA does not want people to supplement their income when they're on disability.  This is the trap a lot of us long term survivors fall into-being too ill to work full time, could work part time, but are stuck in the system because the system does not want us to get a head at all.  To those I've told they can work when they say they cannot-I apologize. 

This has been a real eye-opening experience.  I will never again encourage anyone on disability to go back to work, unless they are sure they can handle full time work and can find a good job that will earn them a living wage and has good insurance. 

Just wanted to put this out there-if you've read the whole thing, you're doing better than I could lol.  Will keep those of you aware of this, updated on what happens. 

I still get those pre-recorded messages (by phone) from the Ticket to Work program. 


Was a suckfest. :( Our government at it's best. Ugh!

Best of luck to you getting them to see reason.

I really hate to see people treated this way especially someone like you who deserves so much more.


Thanks for the warning.  The holidays are always the busiest time for free-lance musicians.  So I will think carefully before I accept any gigs for the next couple of months!!!!

Going down to the SSA office today was an WTF moment.  In the last letter I received, they gave me a contact name and said she was at my local office, which would be South Bend, IN.  So, I get there 1/2 an hour early, stand in line, then find out the woman is not there, she is in Baltimore lol.  The man I talked to went and talked to one of their caseworkers, who said they will most likely suspend a month's pay.  Which would be disastrous as far as paying things like, oh, rent, insurance (car, Part D, Medicaid for working disabled, renter's), etc.   

So when I got home I called the number for my contact person. She didn't answer the first time so I called back again right away and she answered.  When I was done talking to her I felt like I was going to have a heart attack.  She was asking about 2011 income, when I attempted to work full time and went off disability for several months.  Well, they have that income, as they get yearly income from the IRS.  She kept asking me "do you dispute the income we have for you from 2011?" (which was the year she kept asking about).  I kept arguing with her about me working full time and going off SSDI for several months and only going back on when I had to return to part time work. 

She said my benefits should have been suspended last November when I went over the $24.  I asked her about the "averaging," they can do, where they take the whole year's income into account and average it over 12 months.  She said they did.  I told her they couldn't have, or it wouldn't have been over. 

After arguing with her for several minutes (about 25), she finally asked if my job gave me any subsidies.  I asked her exactly what she meant, and she said some things like a job coach, extra breaks, extra time off etc.   I told her they did, which is basically true since I had to start work part time again.  She said she is going to send them some papers to fill out asking about subsidies and she will see what they send back.  She said the benefits "may" depend on this, but they still should have been suspended last November. 

This has been such a cluster fuck.  It all started in July, and now it's November and still isn't over.  I was considering quitting, and will if that's the only way I can keep the benefits.  But, when I told the lady I had a letter from my doctor about not being able to work, she said it wouldn't make a difference.

She said my job should get the letter by next week and should fill it out and send it back asap.  So, we will see......  When I got off the phone, I had to lay down because I was having a difficult time breathing regularly, with pains in my chest.  I knew it wasn't a heart attack, but rather stress because of this continuing saga with SSA, who doesn't seem to know what they're doing.

I will keep anyone who is interested updated.  While it does help to supplement income with a part-time job, the total nightmare of work reviews is barely worth it. 

Thanks, Mitch, for the kind words.  They're appreciated.


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