How I ended my disability benefits and navigated the frustrating system

Charles Sanchez
Charles Sanchez

Living on government benefits is odd

A couple of years ago, a friend of mine called me a deadbeat. Not directly, but she worked at the time for a city health insurance company, and fraud was her hot button. She was talking about people who were on disability but were healthy enough to work.

“They’re lying! They’re cheating the system! Bunch of deadbeats!” she cried.

Like me, I shamefully thought.

In 2003, I was hospitalized while living in Little Rock, Arkansas. Being diagnosed with histoplasmosis, thrush, and pneumocystis pneumonia is a hell of a way to find out you have AIDS. In the three-plus weeks that I was in the hospital, most of that time, I was in a drug-induced coma and fighting for my life. While I was enjoying the bliss of anesthesia (the doctor referred to it as “milk of amnesia”), my amazing parents took care of all the messy stuff and filled out the paperwork for me to receive government benefits. By the time I was released from the University of Arkansas for Medical Sciences Hospital, the machine was already in motion, and I received my first government check shortly thereafter. I was also enrolled in Medicare, Medicaid, and the Arkansas AIDS Drug Assistance Program (ADAP). I went from someone who sometimes worked three jobs at a time to someone not working and living on disability.

Living on government benefits is odd. I was receiving a monthly check, but it wasn’t easy to pay all my bills, eat and have a bit of a life solely with the disability. I was grateful that people living on assistance are allowed to work part-time as long as they make less than a certain amount each month. It’s kind of like a gilded cage: The government money is nice, but you have very little freedom.

I also felt terribly guilty. When so much of who we are is defined by what we do, telling a cute guy at a cocktail party that I’m living on disability isn’t sexy. In this country, we’re taught that to be on any kind of government assistance is shameful and that one should be able to pull himself up by his bootstraps. Theoretical linguist Noam Chomsky is quoted as saying that public assistance is based on the principle that we care about other people. “You care whether the widow across town, a disabled widow, is going to be able to have food to eat,” he said. But the reality is, in this country, we feel that if that widow is able to wheel herself to the Piggly Wiggly, she’s able to get a job as a greeter at Walmart.

Maintaining Health Insurance While on Disability

After a few years, I regained my strength and learned how to navigate the world as a person living with HIV. I was doing some part-time work, enough to feed me and get me to a movie every now and again. The guilt of being on assistance began to compound since I didn’t feel like I was disabled. But there was another issue with living on disability: the health insurance.

HIV medications and treatments are not cheap. When I first saw the bill for my monthly medications, and it was in the thousands, I was shocked. I never realized how expensive I was! Prior to my diagnosis, in my career as an actor/waiter/bartender, I rarely had a job that provided health insurance. I don’t have a college degree (I graduated from the American Musical and Dramatic Academy, but no degree), so if I did get off disability, the question wasn’t how would I pay my rent, but how would I pay off the thousands of dollars of monthly medical delights that I’d gotten used to, like lifesaving drugs and doctors? Going back into the food and beverage industry seemed like a slow, soul-crushing suicide, and most restaurants don’t provide health (or any) benefits. It looked like the best way for me to keep myself alive was to stay on disability so that I’d have health insurance. So I did.

Fast forward to March 2021. Now living in New York (since 2008), I started getting envelopes packed with paper from Social Security Disability, saying that I was “under review.” They said that it looked like I’d been making too much money and may no longer qualify for benefits.

There is a Ticket to Work program, where someone on disability can work for what they call the trial work period, but although I never enrolled in that, the government considered every month that I made more than the allotted amount to be part of the trial work period. According to their records, I reached that threshold in 2017, and I have made more than I should have consistently since then. I couldn’t fathom how my piddly jobs, ranging from envelope-stuffing office work to conducting phone surveys or the occasional article I’d write, could cause a red flag to pop up — but, apparently, it did. I panicked.

Truth be told, I never really paid too much attention to the amount of money that’s allowed as income above disability. The amount changes from year to year; they never send out a notice about the change. I knew I wasn’t making that much. I mean, none of my part-time gigs paid a Rockefeller’s salary. The nine months plus three deal was completely off my radar. I knew that sometimes I was making more than I was supposed to, sometimes less, so I figured it’d all even out. Admittedly, I was looking at the whole situation with both blinders and rose-colored glasses on.

After much paperwork back and forth with the sometimes-not-so-friendly folks at the government, tax returns being gone through, check stubs being searched for, and phone calls where I waited on hold for literally hours, I got the rough news in October of last year: I am no longer eligible for disability benefits because I’ve made too much money since 2017. Not only that, but the letter also stated that I owed $85,000 back to them in overpayments. “Please send a check immediately,” the letter said. AS IF.

I freaked out. What the hell was I supposed to do? I took a deep breath and let it out. And I remembered once a boss telling me, “If you can make the pile of crap, you can clean up the pile of crap.” I didn’t like that boss but recalling that sentence gave me a little comfort. I can fix this.

I spoke to the benefits specialist at GMHC, my local HIV service organization, and she said I should try to stay on disability if possible because once you’re off it, it’s difficult to get back on. Regarding the $85,000, she said that while the government would get its money one way or another, it wasn’t the end of the world, and I could be on a payment plan. A good friend who’s a lawyer told me, “Don’t make the government your priority since you certainly aren’t theirs.”

The good news was that I could stay on Medicare as long as I paid the $170.10 monthly premium, so that’s a relief. I’ve been able to create work situations (one of them this very publication) that keep me eating with a roof over my head and cable TV.

Ending My Disability Benefits

I’ve appealed to the government for them to forgo repayment of the money they say I owe them since I don’t have money or any assets: savings, land, a house, or a car. I live in a rented basement “efficiency” apartment in New York City, and right now, my monthly income averages just above the poverty level. My biggest asset is my laptop computer — and the space bar on the keyboard sticks. The latest missive from the government told me that they received my request, and I am once again “under review.”

This has been one of the most frightening experiences of my life. I had to fight the urge to hide and bury my head in the sand and face the big bad government head-on. Through this fear, therapy has helped, along with talking to other folks in the HIV community, friends, and colleagues.

Eating copious amounts of chocolatey goodness also calmed my manic panics. If you find yourself in a similar situation, I recommend reaching out to your local HIV service organization for guidance and support, and if you can afford one, a lawyer who specializes in Social Security Disability. I also recommend having a bag of Snickers on hand for emergencies.

I have been off disability, no longer receiving benefits, since October 2021. It’s scary, but it feels good to be earning my own money and not having to rely on Uncle Sam. I like that the cloud of shame that I carried with me for so long is gone.

But why was there such a cloud of shame? I needed help. I was without resources for a time. I am single. I was scared. People sometimes derisively say that public assistance is just a crutch. We need to remember that a crutch isn’t a bad thing when you need it to help you walk.