I tried to stay focused on my game. Really, I did. But every couple of minutes, I would scan the room and double-check what number they were helping now.
I knew the time would pass more quickly if I could lose track, but there were a lot of sounds by a lot of people.
The security guard’s microphone clicked occasionally, as he sat reading at his desk. The sign-in computers in the corner hummed, with the occasional keyboard clicking when a new person entered and joined the queue.
There were a few information desks in the front. Occasionally, I’d hear a quiet conversation there, between a newcomer and a staff member – asking what they needed to do, or apologizing for being late, or thinking that maybe they’d get helped right away somehow.
The people in the room varied in age, race, the appearance of health, and socioeconomic background. What was consistent was that we were all waiting, resigned and anxious, for our turn.
In one corner, a woman tried to get her young children to mind her. In another section, a mature black couple was holding hands. An obese woman sat in another section, on her mobility scooter.
We all waited for our number to be called. Eventually, very eventually, my number went up, and Al and I walked over to the waiting government employee, to plead my case to have my benefits reinstated.
What are the rules about working on SSI or SSDI?
The basic rule about working while on Supplemental Security Income(SSI) or Social Security Disability Income (SSDI) is that Substantial Gainful Activity(SGA) is a line that you never want to cross if you want to maintain benefits.
SGA is determined annually and is a somewhat arbitrary value that the federal government has set as the maximum amount that a person on disability can earn and maintain their benefits.
For 2018, SGA was $1,180. At the time I was writing about above, it was lower – when I first went on disability in 2003, SGA was about $1,000.
When you are working, if you earn over SGA, the countdown to losing your benefits starts.
Restarting the clock is challenging, but sometimes possible, and there are, of course, a variety of ways that your income can be looked at and interpreted. Depending on your particular situation, the precise amount of money you can make before your benefits are endangered may be slightly more or slightly less than SGA, but SGA is always part of the base calculation.
While the programs state that they are doing everything possible to encourage people with disabilities to work, that is only somewhat true.
The long waits to talk to a person if you call social security, the long waits to be seen if you go to their offices, the insanely long waits to learn if you even got on the program all, all serve as deterrents from pushing any of the limits, or even asking questions about them.
I know I didn’t want to think about it, so instead, I ignored how much I made and didn’t do my research.
So how did I lose my benefits? By being overly optimistic
In 2007, I was hired by a community college to teach GIS.
They also hired me to run their fledgling GIS program.
I was very excited by the whole thing and loved my work.
I also was teaching classes two or three nights a week on top of running the program about 20 hours a week.
I was definitely over SGA, and hadn’t really thought through what would happen after my trial work period. A couple of months into the job, I found out: I stopped receiving SSDI checks, and a very slow countdown started to ending my Medicare coverage.
I kept working, even though the job couldn’t permanently support me.
I think I hoped that the position would eventually be a full time one(I was the only person at the college who knew anything about GIS so the thought wasn’t insane), and I threw myself into it wholeheartedly.
When the job abruptly ended, I scrambled to find some additional work(more clients for my business, and reached out to another community college about teaching there), but I was also pretty shaken by losing my position(I wasn’t replaced – the program had run out of funding and eventually ceased to exist), so my symptoms increased significantly.
For the next year or so, I put together little chunks of work but was only working close to 10 hours or less a week.
I informed SSDI about my change in circumstances(basically going from working close to 30 hours a week with an hour commute each way, to working mostly from home and 10 hours a week or less, with the occasional exceptions, and, more importantly, the associated drop in pay).
My benefits continued, but I was also told that I was on the edge of needing to reapply.
I had not only used up my trial work period(TWP), but I also lost my job on the last month of the extended period of eligibility (EPE), so I would have needed to do an expedited reinstatement if I had lost my job a month later.
Fortunately, I did not need to redo that(the process would have taken months…but also would have given me a new trial work period), so my benefits got reinstated right after I made the request.
I limped through the next year or so, healing and doing whatever bits of contract work I could find.
Compounding my mistake – returning to work without a plan
In March 2011 I suddenly found myself with an embarrassment of work.
I had applied for a job with the Division of Disability Services(part of the NJ human services department) and was hired to work as close to full time as I could manage.
Trenton is about an hour’s drive west of me, and very challenging to get to on public transportation.
I also finally had a course started at the other community college I was talking to, which was around an hour’s drive north of home.
Both jobs started the same week, in the middle of March.
My mother was also working in Trenton, so she would pick me up and we would drive to work together four days a week, and then I’d ride back with her three nights a week – the other night, I would leave work early, walk to the train station(about 20 minutes walk), and catch the train up to Newark, where I would catch a light rail to Jersey City to teach.
My other teaching day, I also saw my therapist in Manhattan – so I’d get up those mornings, walk up the street to the train station, hop a train to the city, see my therapist, have a couple of hours to spare(some of which I spent trying to pilot my time banking project with a behavioral support group), and then head over to campus to teach.
I was busy – it was beautiful! I managed it all surprisingly well for the first month or so, but I was having my symptoms go up a little bit.
I was excited about everything and hopeful for my future. I wasn’t sure if I could keep up the momentum, but I wanted to try!
That was when I got my acceptance letter from the graduate school program I had applied for. They were looking forward to me joining the program in the fall of 2011!
I knew that grad school was a priority for me, as it would give me a master’s degree that would make me a much better prospect as an adjunct professor. I also was doing well enough that I felt I could likely handle the rigors of graduate school.
I decided that my next step would be to cut my hours down so I was back under SGA so I could maintain my benefits as I headed to graduate school.
Getting my benefits reinstated
So, there I was.
Late April of 2011, I nervously waited to talk to the good folks at the Social Security Office.
There hadn’t even been time for them to realize how far over I was, and already I was going in to request my benefits back.
Eventually, I did go in.
Al held my hand as I explained to the staff member there that I knew I was over SGA.
That I had been so excited by these opportunities that I had not considered my SGA.
That I was already fatigued by my workload and my symptoms were increasing(I was explaining this between spasms, rocking back and forth, and other typical symptoms I would have under stress – which I was certainly feeling!)
We discussed my hours and how much I would need to adjust things to maintain my benefits.
I had done my research ahead of time and knew that I needed to bring my hours down a lot, but it was still a blow to realize I needed to work no more than 7 full days per month!
I assured the staff member that I would be doing that, and then suddenly blurted out that I was also self-employed.
She had been about to write things over so I’d be fine, but that little admission led to her saying she literally could not grant this to me currently, as even then my numbers were too high.
A couple of weeks later, I returned and ended up speaking to the same woman.
My teaching hours were going to end in May, my work hours were being cut down, and I finally emerged with the reassurance that my checks would start again the following month, and I would not lose my Medicare coverage during that time.
I was very relieved and swore to myself to never go over SGA unless I was utterly positive that I would not need to go back onto SSDI ever again.
Conclusion: Can I work and still receive social security disability benefits?
The short answer is that yes, it is possible.
I went without my SSDI benefits check twice since I got on SSDI. Both of those times were relatively shortlived(the first was a few months, the second a couple).
Being on the verge of losing my benefits was frightening and stressful, which is why I have been carefully considering my best ways to work and pursue my purpose while not endangering my SSDI benefits.
This blog and some associated projects are my planned way to keep myself positively engaged, be supportive of my community, and have the possibility of being self-supporting.
If I don’t, I still will have a great community and a purpose to keep aiming for. My primary goal is to take good and appropriate care of myself, but I do have the dream of eventually not needing my SSDI benefits.
No matter what, though, I’ve created a worthwhile project for myself and hope that you are finding it helpful!