Social Security’s substantial gainful activity limit for non-blind disabled adults on SSDI and SSI is $1260 for the year 2020. This means if you make more than $1260 in a month you may lose your Social Security Disability (SSDI) and/or your Supplement Security Income (SSI).
Almost any amount of income will count against your SSI which is needs-based. However, disability is a tricky field to navigate because you had to work in the first place to qualify for any benefits at all that aren’t SSI.
There are exceptions to the rule that you must have worked 10 years or 40 work credits to qualify for disability. They are age exceptions, which are detailed in the table below.
I guess it was good that I had work study in college because without that income every quarter, I wouldn’t have qualified, but I only received less than $400 dollars per month when I first became disabled at 21 because disability is calculated according to your work history. I only needed 6 work credits or 1.5 years which I thankfully had in February 2008.
I can’t speak about others’ experiences trying to get on disability, but my schizophrenia was severe enough that I was repeatedly hospitalized and deemed unfit to work.
I thankfully didn’t have to get a lawyer and I got disability after waiting over 1.5 years which I think is typical due to a backlog. The nice thing about once you’re on disability is that you get a lump sum from the date your disability started.
The not so nice features I will detail below.
I had to prove that I’m still disabled, which meant that I had to see their doctors and therapists to verify that yes, I still had schizophrenia and yes, I still heard voices, and yes, I still couldn’t work a meaningful full time job.
There is a 9-month trial window where you can work and still get disability. I used that up pretty quickly while I tutored in Koreatown after my college graduation. I needed to work for my sanity but had to prove my insanity in order to collect monetary and medical benefits.
What I didn’t realize back then is that they know you’re working from your social security number and taxes reported not what you report to them.
This meant that it took me a year to wise up and say yes, I was making more than the SGA and that I had to pay all that money back in SSDI and SSI benefits for the months past 12. They give you 3 months after the 9-month trial, which may seem generous but trust me, time flies by.
But I’ve always been wise with money. I had always been a spendthrift. I didn’t spend money willy-nilly. I saved everything I earned but set up a payment plan for the SSDI and SSI I owed.
This meant I could treat it like a no interest loan and pay down my high interest student loan debt which was over 10,000 dollars after graduation from Caltech. I think this is a high amount for any young person, but a low amount compared to typical student loan figures.
After I realized I was paying $1400 in interest a year, I decided to pay it all off and take my time paying off Social Security.
While Social Security was a godsend for me, it’s still the needle in my camel’s back. I lost it while working full time in Portland as a Medicare Sales agent.
Yes, I was making good money but mentally I was broken. I would cry every day working 11 days in a row without break. I’d hear people talking about me when I took my lunch breaks alone and miserable. I was slowly deteriorating and a switch in meds meant an imminent psychotic break was on the horizon.
My sister got sick and responded well to Abilify, so I decided to switch to that drug, which had been the first prescribed to me. I’d been on Geodon for over 5 years, but I decided to switch anyway. I felt like someone was cutting out my kidneys almost every day for those 5 years.
I had my disability review in January, and I quit my job the next day. I was fed up. I ended my long-term relationship and flew back to Chicago to my parents but was in the mental hospital within a week.
Clearly, I was disabled, but that’s not what Social Security said. I had done the devil’s work and made over $3000 in my best month, so clearly well above the SGA limit.
Here’s a table of the substantial gainful activity for blind and non-blind disabled adults. Notice how the blind SGA has risen by $70 instead of a paltry $40 per year for non-blind.
So, what will I do with $40 more per month? Probably, zilch. I don’t think my income will rise that high as I currently make less than $1000 per month typically. There was only one month in the past year where I worked enough to warrant doctoring my self-reported hours to less than $1220.
I lost my disability and health insurance through Medicare and again had to battle to get back on. It took months and my medical debt skyrocketed.
Without insurance I paid $375 per doctor visit every 2 weeks and that was supposedly the discounted rate from $500. This was for 45 minutes of my doctor asking me “Do you have any brothers or sisters?” repeatedly as if to say “Do you have anybody who can give me more money for prescribing you the pills you need to not feel pain 24/7?”
I went to the pharmacy for the first time without my Low Income Subsidy, which meant my prescription went from $3.30 to $500. I cried. That brought it down to $250.
I wouldn’t have been able to deal with this crisis without my wonderful fiancé. Even as I ran away from him, he came and visited me every day in that horrible mental hospital in Chicago.
Everyone knew I was being mistreated. They gave me a quarter of the medication I used to take. Even so, I was forced to stay in the hospital until Medicare’s original authorization ran out in a week, even though I was well enough to leave after a few days and my hospitalization was supposed to be voluntary because bottom line, they needed to make money. They were admittedly for profit.
I guess the only good side to being sick so often, is I’ve seen my close family and friends often and I know who they are because they were the ones willing enough to drop everything and visit with me every day.
I don’t know how anyone can make the difficult decision to hospitalize someone, but I needed to pay a lawyer $3000 to get me out of my last hospital stay in May 2015 because my sister wanted to put me in a state hospital believing my delusions that I was being physically and mentally abused by my romantic partner.
Admittedly, I was out of control and my PTSD of hospitals made it so that I feared getting the intensive treatment necessary to put my schizophrenia back into remission. My partner did the best he could and sometimes had to prevent me from leaving the house but that’s not abuse, that’s unconditional love.
Every life is filled with strife, but I’m doing well on my new medication regimen and have even been able to half my dosage and guess what? On Zyprexa, I no longer feel like my kidneys are being harvested or that my coworkers are talking about me outside the lunchroom. Wait, my coworkers are in different states now and I work from home. Never mind.
I wonder if I’ll ever get to making over that magical number of $1260, but for now I’m grateful for every hard-earned penny including what I make here on Medium.
If you want to read more about hospital abuse, read my impeachment article of Rahm Emanuel and the corruption at Hartgrove hospital here, my first article on Medium.com.