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The Social Security Con: How Stay-at-home Moms (or Dads) Lose Their Social Security Disability

Applying for SSDI is a more difficult decision than anyone can imagine. It means looking at your once healthy self in the mirror and saying, "I am a disabled person." Can you do that? Can you even conceive of it? Neither could my sister-in-law just two short years ago.
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Imagine you're part of a couple (woman or man, doesn't matter) who had a career for 18 years. You've worked. Paid taxes. Bought a home. Established yourself in the community. And, like many couples today, you decide in your late 30s that you are financially stable enough and ready to start a family.

Twelve weeks after your child arrives, the time zooms by and it's time to return to your career.

At the last minute, you decide that staying home and raising your child would be the better choice. With a few tweaks and cuts to the family budget, it occurs to you that you can afford to stay home.

Months become years and the new career you've built for yourself -- raising your child(ren) -- pays you in intrinsic dividends beyond your wildest dreams.

Maybe, like in the case of my sister-in-law, you've not only decided to raise your child, but you've determined that a home-school option is a far better investment in your child. So you're not just a caregiver to your child, but you're his/her teacher. The government doesn't pay you for that. In fact, you're still contributing mightily to the local education system through your residential real estate taxes, even though you're not even utilizing them.

Then one day, out of the blue, your family receives a devastating blow, a heartbreaking medical diagnosis that threatens to destroy your family unit, and its finances. Say, a diagnosis like ALS (amyotrophic lateral sclerosis), the diagnosis my sister-in-law received in August of 2014. But really, it can be any life-threatening illness, one that strikes the family's main caregiver -- be it a stay-at-home mother or a stay-at-home father.

At first, unaware of just how costly a catastrophic medical event would become and just how deeply it would strain the once-balanced family budget, my brother and his wife -- like many Americans in the same situation -- tried to make it on their own.

However, in a relatively short period of time, caregivers were required to help my sister-in-law manage her activities of daily living -- dressing, grooming and eating. Scratching an itch, removing a stray hair from her line of sight. Communicating once she had lost the ability to speak.

In a situation like the one I've described, hiring caregivers is a necessity. And a costly proposition, a cost not borne by most health insurance policies.

Just four months postdiagnosis, out-of-pocket costs began to mount. So my brother looked around for options to offset the onslaught of bills, when it occurred to him that there's a government system his wife paid into -- nearly 20 years throughout her career, to be exact -- Social Security Disability Insurance (SSDI).

Applying for SSDI is a more difficult decision than anyone can imagine. It means looking at your once healthy self in the mirror and saying, "I am a disabled person." Can you do that? Can you even conceive of it? Neither could my sister-in-law just two short years ago.

Believe me, for an individual who has enjoyed a healthy, full life, participating in her community, energetically raising her child -- basically engaging in all her activities of daily living without a struggle -- it was a hard pill to swallow.

Now take it one step further. Say, "I am a disabled person. And I need help." How many of us can utter that phrase, "I need help"?

Well, if you're a parent, you're not used to asking for help. You're a provider. Of help. Of love. Of support. Of education. Of all those things your family needs every day. You are a provider, the one who gives the help, not the one who asks for it.

So asking for help, walking into the Social Security office to file a disability claim, is a humbling experience. But in my sister-in-law's case, it was a humbling experience that turned humiliating (and, for me, infuriating) when her claim was turned down.

Imagine, if you will, being struck by a disease for which there is no cure, a disease that will leave you completely paralyzed and without speech, without the ability to dress and feed yourself, a disease that will require around-the-clock care, a disease such as ALS. According to the Les Turner Foundation, Chicagoland's leader in research, patient care and education about Amyotrophic Lateral Sclerosis, "ALS progresses at different rates in each individual. The average survival for someone affected by ALS is three to five years." And there is no cure. If that's not the definition of disabled, I don't know what is. But "denied" was the stamp left on her claim form.

How can this be, you ask?

It's a little-known fact: When one leaves the workforce for more than five years -- no matter how long they've paid into the system -- Social Security Disability benefits evaporate. Simply put, the money you paid into the system is gone, returned to the "pool" for others to use.

What I have learned, what many people have been shocked to learn, is that the money one pays into Social Security Disability does not remain for all time. explains it clearly. There is what is called a "recent work test." To pass this test, you must have worked 20 of the last 40 quarters, which is, more simply stated, five of the past ten years. It doesn't matter that you worked for 20 years and paid into the Social Security Disability System. In fact, it doesn't matter if you've worked your whole life and then stopped. Your DLI depends on the date you stopped working (at a job that pays into the Social Security system through FICA taxes).

Again, if you leave the workforce for more than five consecutive years, your credits expire. (I'm repeating myself on purpose here, to drill it into your head.) You're left to fend for yourself. Liquidate your assets. Remortgage your home. Suck money from your retirement account. While someone else is using the money you paid into the system.

It seems very un-American to me.

Certainly, that money went into the Social Security system. And, to be sure, somebody else is using it because it is "returned to the pool" when unused benefits expire.

So I took a different tact with Social Security. I pointed out to them that in my sister-in-law's case, a prognosis of ALS assures her that she won't make it to retirement age to collect her Social Security retirement benefits, money taken from her payroll check for nearly twenty years.

What was Social Security's answer? She is not eligible to collect that money until she's sixty-seven.

As everyone has come to know, thanks to the well-publicized Ice Bucket Challenge of 2014 that raised much-needed funds for research, ALS has a 100 percent mortality rate. According to, once diagnosed, the patient survives three to five years, only 5 percent will live 20 years or more. Doing the math, my then fifty-two-year-old sister-in-law would not make it to sixty-seven, the time when she could then start collecting her Social Security retirement benefits. Not by a long shot.

In addition to paying into Social Security Disability, the money she paid into the Social Security retirement system is not available to her. Where does it go? As in the case of her SSDI, back into the "pool" for somebody else to use.

So where does that leave us, the collective us? Americans who work hard and pay into a system that we believe is for our future benefit? Empty-handed.

As I sat down to write this piece, the last thing I wanted to do was politicize my sister-in-law's plight. Because it's personal. Very personal. To all of us fighting alongside Vicki, it is extremely personal. But then, it occurred to me, it is very possibly extremely personal to many other Americans similarly situated. And it will become very personal to Americans who will find themselves similarly situated when a member of their family, too, receives a devastating diagnosis like ALS. Or when the main caregiver, not employed outside the home, suffers a stroke or has an impairing accident that renders them completely helpless. In the end, the inability to care for one's own needs, denied the right to collect benefits from a system they paid into, is the common denominator.

Without a doubt, the topic of disappearing/reallocated/absconded benefits becomes deeply personal for any family who learns that they are left out in the cold by a system-indeed our government-that takes our money via the FICA contributions in our paycheck and then tells us we don't qualify in a time of true need.

So I have to politicize this. Forgive me, but I do have to politicize this. Because it occurred to me that we are in an election year. A year where we are all being bombarded by campaign ads and robocalls trying to persuade us to choose a candidate. And yet as I listen to the debates on both sides of the aisle and watch the ads on TV, listen to pundits sift through the rhetoric and try to translate the garbled messages, I hear nothing about the Social Security rip-off, nothing about what our candidates are willing to do to bring fairness to average American families who pay taxes for benefits they will never receive.

In the end, there are two choices, as I see it. One, to start a dialogue, a very loud dialogue, that reaches the ears of our elected officials. But not just a dialogue, because this is a topic that is far too important to be an unobtrusive, nor apologetic, conversation. What needs to happen, as I see it, as I hope you see it, is a non-rhetorical question posed to our elected officials; that is, a question that requires an answer to the American public as a whole:

"What do you suggest I do with my incapacitated family member who paid into Social Security who, in the end, is denied the ability to collect money that the government has reallocated/absconded with/redistributed?"

It is a bold question, a pointed question. It's almost crude sounding as I write it. But the question is one that deserves an answer.

However, absent any response from our leaders, the answer, to me, sounds something like this:

"Well, you can watch your family member suffer and die, along with your assets, so that, in the end, you are left heartbroken. And bankrupt."

The second choice Americans have, the more prudent one, is to accept that you have given away your hard-earned money without protest (because we can't) to Social Security, funds over which you have no control, and purchase a private long-term disability policy. That's right. Accept that you have given away your money and then accept what is, in effect, a double-payment because you are forced to pay for a private long-term disability policy.

Honestly, the second option seems less than rational. The latter of the two alternatives leaves Americans who will one day experience a catastrophic medical event but who have left the workforce to raise a child (or care for an ailing parent), in effect, paying twice for coverage, coverage that should not be denied them by their hard-earned tax dollars in the first place.

As I stated earlier, the last thing I wanted to do when I sat down to pen this article was to politicize ALS or any other disease that renders primary caregivers helpless and, as a result, without proper benefits. But it's not until we discover a crack in the system that we can repair it. And the time has come, I believe, to repair a gaping hole in our Social Security Disability program.

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