On Bureaucracy and Burden

If you can’t work due to a disability, you have options—at least in theory. Any person can file a claim with the Social Security Administration for Social Security Disability Insurance (SSDI) to have their medical case considered for approval for disability benefits. You also have to meet some stringent requirements, like having worked long enough to be considered “insured” and having paid at least some social security taxes. The rules are so strict that most people who apply are rejected.

This might sound like another manifestation of the burden placed upon people to navigate the “social safety net” themselves. But when you yourself are in the labyrinth and you see no way out, it’s even worse.

Contrary to the reasonably simplistic language posted on the Social Security Administration’s website, the program is inordinately complicated. It appears to have been designed to keep lawyers in business. Case managers must undergo multiple months of intensive training prior to taking control of their caseloads. At base, it’s an assembly line job, with quotas to meet and constant pressure.

In mid-October of this year, finally, mercifully, my four-year joust with the Social Security Administration (SSA) came to an end. The SSA was created in 1935 as part of the New Deal in order to administer Social Security, the largest government program in the US, and one in which the vast majority of Americans participate or will participate throughout their retirement years. The subject of my experience, SSDI, was established later, in 1956. And because of this program, four years of my life were a hideously protracted slog of red tape, inefficiency, delay, and simple incompetence. The story to follow is unnecessarily complicated, mirroring how easy it is to get lost in all the minutia and paperwork as one fills out maddeningly exacting forms to move the process along.

It started with a significant coding error. I was granted nearly $13,000 over a four-month period beginning in the spring of 2018. The SSA, by law, is supposed to send SSDI recipients a comprehensible rationale for every substantive decision it makes—by mail. I waited by the mailbox for a long time, thinking this had to be a mistake. But I received nothing.

I did my due diligence; I called the SSA immediately about the situation. Still, I received nothing from the agency—so maybe it wasn’t a mistake, and I could use the money to purchase a car, as my own was old and needed replacing. And then, about five months later, a computer system caught the problem I had already flagged, and I was sent a notice informing me that all the money I had been sent—not an insubstantial sum—had to be paid back. And fast. In the beginning, I was told that I’d be provided absolutely no money to speak of until thousands of dollars had been paid back. After several phone conversations with SSA workers, I begged to have at least half of my monthly allocation granted to me, though it would take twice as long to get my full allotment back. I subsisted on savings for as long as I could, but clearly the situation was not sustainable.

Once again, I followed the rules and did what I was supposed to do. I filed the first of a series of extensive internet appeals, each of which took about an hour to compile and electronically transfer. These appeals did not resolve my case but did ensure that I continued to receive full monthly funds in the short term. My check would be rescinded, I’d file an appeal to delay the process, and then do it all over again the next month.

Before long, I had filed six separate appeals. SSA eventually got tired of the extra work and decided to withhold approximately half of my monthly allocation to pay off what it considered to be overpayments. For fifteen months consecutively, the nearly $1,300 a month I should have been receiving was cut down to somewhere around $700.

It’s tough to live on that paltry sum—but I had to make do.

Many people have been led to believe that the people who receive SSDI are scamming the system. Politicians manipulate that anger and resentment for their own advantage. And so, it can get harder and harder to get benefits.

One of the reasons that people may believe that many with disability benefits are committing fraud is because of so-called invisible disabilities like my own. If I had just been diagnosed with cancer or needed dialysis, I’d be fast-tracked towards an acceptance. To show how far medicine has progressed, to cite one example, now that AIDS is no longer a death sentence HIV infection alone is not enough to be approved for disability. In my own case, the severe anxiety disorder that has always hampered me for as long as I can remember keeps me out of the workforce today, though that’s not where I’d like to be.

This past April, my SSDI case was finally assigned to an administrative law judge, at my request. Every claimant has a right to request a hearing with one of these judges—a crucial detail SSDI caseworkers probably won’t tell you. Administrative law judges have legal authority over SSDI. The decisions they hand down can overrule SSDI caseworkers, as well as the doctors who usually have final say over who receives disability. Due in large part to the fact that I kept several years’ worth of paper documentation—which not everyone can do—my case was a strong one.

By June, in keeping with the system’s own parlance, I received a fully favorable decision. In layman’s terms, the judge ruled for me on every point of contention I’d raised. Several thousand dollars that should never have been taken away from me in the first place were returned. I’m grateful that the issue was eventually corrected, but the victory was a hollow one in a lot of ways. I wasn’t jubilant when the judge ruled in my favor. Mostly I was relieved.

I’m thankful to receive what I do receive. But admitting to myself that I have a debilitating, chronic disorder with treatment options but no cure took a while.

The SSA runs a program that few know about called Ticket to Work—its full name is Ticket to Work and Self-Sufficiency Program. Ticket to Work, in theory, allows one the ability to try work for a while, but not lose crucial benefits like health insurance. Like many, I applied, participated, and variously lost several jobs. The cycle continued unabated for years. I was never able to get a career off the ground—nine months at one time was my longest stay at any one job. Without good references and a solid work history, a person with my limitations often meanders from place to place, drifting frequently from one dysfunctional environment to another.

After having an episode intense enough that I had to spend almost an entire month in a hospital, I knew my only option was to opt for full disability. Work simply wasn’t going to cut it. Yet, like many Americans without the ability to stay in the job market for any prolonged period, I consistently dragged my feet and delayed the pittance that SSDI provided.

One can hardly fault anyone for seeking employment that they can’t really manage, in part because SSDI pays out very little each month. Many disabled Americans continuously enter and exit revolving doors of career frustration—forever in and out of the workforce, always having to juggle expenses, never sure how they’ll pay for their next hospitalization or specialist visit.

Gainful employment has many perks—a sense of contributing to a functional, rewarding work setting while feeling useful. Some people form close friendships with co-workers and staff—people who often become a person’s primary social outlet. And the money.

Relying on the limited income that SSDI provides means that we are dependent on our benefits, whether we want to be or not. Yet dependency in any form runs contrary to that very American strain of rugged individualism (recall the Ticket to Work and Self-Sufficiency Program). So, some might snidely call these benefits a government handout, but they’re more a lifeline to survival. They are, after all, the only option remaining for me.

Sometimes, I think about the five months I spent in a research trial at the National Institute of Health (NIH). American taxpayers paid for the airfare and transportation that brought me to the NIH in Bethesda, Maryland at absolutely no cost to myself. Three meals a day were provided, as well as a place to sleep at night.

And I was trusted and valued by staff and by other patients. When I had extra time, I willingly and eagerly cooked for the other patients. A small kitchen area with oven, range top, and stove was attached to the unit. There were no unreasonable demands of insurance companies, no caseworkers questioning your story. This degree of functionality, and yes, sanity, seemed far too good to be true.

But it was a government agency at work. The question remains, how can government be so efficient in some ways and so maddeningly incompetent in others? I would argue that because we are all part of each other, we owe it to ourselves to intervene. I figured out how to climb the ladders and learn the jargon myself, but learning how to make the most of my available resources was as much a product of my education as it was anything else. I’m not lucky, and yet I know I am very lucky in many ways.