Squares of people working in an office environment. A bolt of lightening strikes through the middle.

Social Security Disability Pitfalls

On May 22, 2009, I was a full-time employee. The next day, May 23, I was permanently and completely disabled. So, what happened overnight?

Was I struck by lightning? No.

Hit by a bus? Nosiree.

Flattened by an asteroid? Now you’re just being ridiculous.

Living with primary progressive MS

Because I have a chronic disease (primary progressive MS), identifying exactly when I was too disabled to work was a daunting task. I huddled with my medical team, my family, and my employer’s Human Resources department. I consulted with a lawyer. I made lists and built spreadsheets. I debated with myself, questioned myself, doubted myself. Then, I picked a day on the calendar, May 22, 2009, and declared it the last day I could work.

I had to voluntarily stop working

Because I have a chronic disease, this was the first step in the process of qualifying for Social Security Disability Insurance (SSDI). I had to voluntarily stop working and hope like hell that I made the right decision — that I would qualify for disability benefits. If I was wrong, I would have found myself in the unenviable position of trying to get a job back that I already admitted I could no longer perform, or of having to obtain another job when I quit my previous one because I stated I could no longer work.

Crazy, right? People who are suffering from a chronic disease and considering disability retirement are already under enough pressure. Their world is falling apart, and they can assume things are only going to get worse, medically. They’re struggling not only with their health, but with relationships, finances, and pesky little issues like how to get through each day while losing control of their bodies.

What’s the solution?

Because there is an element of subjectivity to the decision of exactly when a person with a progressive disease is too disabled to work, these employees should be able to pre-apply for SSDI benefits before stopping work. If the agency rejects the application and believes the employee is still capable of working, then the employee will have that option. If the agency approves the application, then the employee can leave their job secure in the knowledge that disability benefits are forthcoming. Wouldn’t this make a lot of sense?

Medicare and SSDI benefits

The second absurdity associated with our SSDI system has to do with medical insurance. An individual who qualifies for SSDI benefits is not eligible for Medicare until two years and five months after stopping work (with some exceptions, like ALS). This rule is a vestige of the original legislation authorizing SSDI recipients to qualify for Medicare before the age of 65. It was a cost savings compromise so that the legislation could garner the necessary votes to pass.

How cruel is this?

Could there be a worse time to have someone’s employer-provided medical insurance ripped away without replacement? Sure, there are COBRA policies, and there is Obama Care, but again, it is unconscionable to add these costs and worries to a vulnerable population.

Note that low-income disability applicants may qualify for supplemental security income (SSI), which might, in turn, qualify them for Medicaid benefits before the two-year and five-month waiting period.

SSDI applicants should receive Medicare immediately

What am I proposing here? It couldn’t be simpler. Allow SSDI applicants to receive Medicare benefits immediately.

One day, we may fix our broken SSDI system, but I don’t feel that day is near. In the meantime, I advise folks to do everything in their power to remain gainfully employed. They should work with their HR departments to ensure that companies are providing all the reasonable accommodations that are, well, reasonable.

What to do when considering leaving the workforce

At the same time, folks considering disability benefits in the future should take advantage of the time they have left in the workforce to thoroughly plan their departure. They should speak with knowledgeable individuals, including lawyers and doctors, to make sure that when they take that first step, when they voluntarily leave the workforce, they will have a high likelihood of qualifying for benefits. Similarly, they should do everything possible to line up the two years and five months worth of interim medical insurance.

Here is a high-level checklist. Try to stay on the job as long as possible. Plan departures carefully. Make use of all available resources. Advocate for changes in the policy.

I’ve been on disability for ten years. It’s a wonderful benefit. It just needs to be better.

Good luck.

To learn more about SSDI, start at the Social Security website. Click here.

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