Eighteen months after I applied for Social Security disability insurance (SSDI) benefits in 1999, I stood before an administrative judge, waiting to hear whether my application would finally be accepted. I was lucky it didn’t take longer.

Applying for SSDI is not for the faint of heart, especially in North Carolina which approves about 25% fewer applications than the national average. First, you can’t submit an application until you’ve been unable to work for five months. The initial review can take from one to three months: about 30% of initial applications are approved. Once denied, applicants can ask for a reconsideration review which can take another three months: 10% of such appeals are approved. Only then can you can request a hearing. The bad news is that this year it’ll take another 19 months in Raleigh to obtain the judge’s ruling (22 months in Charlotte); good news is that 54% claims are approved. 

Fortunately, I was receiving benefits through my former employer’s disability insurance policy. People without such disability insurance—company-sponsored or private—or without other sources of income can end up bankrupt, become homeless, die even as they wait for a decision on their application/reconsideration/hearing for SSDI benefits.

But even disability insurance payouts may not cover all expenses. Most company-sponsored policies cover 60 percent of one’s salary. I chose to upgrade mine to cover the maximum of 70 percent. Even so, a 30 percent cut in income is hard to absorb, especially with increased out-of-pocket medical bills. The insurance company required that I apply for SSDI, and when it was awarded, assuming it would be, the company would deduct the amount I received from their payout; the maximum I could receive, therefore, was 70% of my salary.

If the judge in front of whom I stood determined I was able to perform some type of work, no matter what it was, I would lose my insurance benefits also. Some policies will pay if you can no longer work at your current job, even if you can do other work. Most, however, will pay out benefits only if you cannot work at all.

 The hearing was daunting. The judge sat on a dais so high that I, standing there in front of him, had to crane my neck to see him. And, it was humiliating. He approved my claim only after being told by a man who researched such things, there was not one job I was capable of doing. I left feeling utterly worthless, relieved of course, but worthless nonetheless.

 Most people I know who are receiving SSDI benefits would rather be working. People have said to me: “Oh, lucky you. You don’t have to work.” But being out on disability is not like an extended vacation: it is extended sick leave. Yet, many of us could work, at least part-time. Two things hold us back. The first is the lack of accommodations by employers that Janna Shisler covered in the first of these columns. The second are the regulations for working set forth by the SSA.

Don’t get me wrong: The SSA wants us to work, encourages us to work and has set up rules to help us do so. They are outlined in the sixty-page Red Book: A Summary Guide To Employment Supports For Persons With Disabilities Under The Social Security Disability Insurance (SSDI) And Supplemental Security Income (SSI) Programs. Five of the pages are devoted to the glossary. I never understood their rules entirely, even though I have read the Red Book more than once, have an accounting background, and have had the program explained to me several times.

What I knew was:

1. If I earned less than the Trial Work Period (TWP) amount, I wouldn’t lose my benefits. That amount is currently set at $810 per month.
2. If I earned more than the Substantive Gainful Activity (SGA) amount for any nine months over a five-year period, I would lose my benefits and would no longer be eligible for Medicare. The SGA amount is currently set $1,130 per month, or $13,560 annually, about 115 percent of the individual poverty level.

My benefits were greater than the SGA, as are the national average benefits. In July, 2016 that average was $1,166. It didn’t make economic sense for me to work unless I could earn an amount greater than my SSDI and Medicare benefits. Or earn less than the TWP amount. I have no idea what would have happened if I earned an amount between the two. I found a part time job in which my gross pay was below the TWP, but a couple of years later I was let go because my boss needed someone more hours than I felt I could safely work. (Though, honestly, I don’t know if I could have maintained the additional hours.)

I believe it would be better, when recipients earn SGA, to lower benefits according to a sliding scale until the amount earned reached a livable wage, or at least their benefit amount. And, for recipients to keep Medicare unless they receive health insurance from their employers or are able to afford such insurance, including the deductibles, through an exchange.

Such reforms, combined with reasonable accommodations from employers, would allow many of us to contribute again to our community and to our own well-being.

Published in the News & Observer’s Chapel Hill News, September 14, 2016