What I Wish People Knew about Disability Benefits

And why the whole system is f*cked

I recently edited a book on Social Security Disability benefits, written by my husband, who was an attorney at the Social Security Administration for over 10 years. He’s not online much, so I wanted to share a few key takeaways from the book with you. In Social Security Disability Revealed: Why it’s so hard to access benefits and what you can do about it, he explains how over 70% of applications are initially denied, how appeals work, and how a judge’s personality and prejudices can influence the outcome of a case.

Here are three key things I wish everyone knew about Social Security Disability:

You know someone who is “on” disability, or who will need to apply, or who should apply but feels ashamed

Many people apply for disability in secret, because they are worried about what their family and friends will think about them, now that they can’t work. This is a function of how much we prioritize work in our culture — many people feel like a failure if they can’t work, and others feel like they shouldn’t “need” government assistance. But one of the things I learned while editing and researching for this book is that almost every US citizen relies on “government assistance” or “public benefits.” Even if someone doesn’t utilize TANF, SNAP, or WIC, they still receive benefits like deducting their mortgage interest, deducting student loan interest, receiving federal student loans, Section 8 housing, or even getting a tax break on an electric vehicle. Not to mention Medicare, Medicaid, Social Security retirement benefits, free and reduced school lunch, unemployment insurance, earned income tax credit, or the economic impact payments many of us received during the pandemic. Around 49% of US households receive a “direct government benefit” but that doesn’t include most of the benefits listed above. It’s illuminating that while 64% of Americans recently received a new tax break, only 39% believed that they had received one. This means that many of us are unaware of the direct and indirect tax benefits we receive, which allows us to think we’re “above” getting government assistance. In fact, over 86% of households receive some type of “government benefit.”

Disability applications require evidence — and a lot of it

Some people jump into a SSDI or SSI claim and think, ‘well, I can’t work because of my back, so this will be simple.’ In reality, there’s nothing simple about a disability claim. Even the most obvious medical conditions often require extensive medical records. And “invisible illnesses” like EDS or fibromyalgia, and mental health issues, need even more corroborating evidence. Unfortunately, getting evidence when you may not have health insurance or a full-time income, can be expensive and complicated. Additionally, the type of medical care that may be most beneficial to you (massage, acupuncture, reiki, chiropractic care) may not be the best “evidence” for your case, either because they are considered “alternative” treatments, or because they may not take the “right” kind of notes about your sessions. This is a good reason to work with a disability representative — so they can guide you before or during your application process to make sure you get treatment notes from practitioners that the Judges will listen to.

There’s no such thing as “fraud, waste, and abuse”

One of the reasons people may feel shame about applying for disability is they’re worried they’ll be perceived as “abusing the system.” I know this first-hand, because when I was laid off from a job in my mid-twenties, I refused to apply for unemployment because I didn’t feel like I’d “earned” it (when I had — literally — earned it, since unemployment is an earned benefit like SSDI) and I was embarrassed to be “on” unemployment. The author explains that there is very little evidence of fraud (people attempting to defraud the Agency by getting disability when they are “not disabled”), waste (when benefits are given to people who don’t “need” them), and abuse (e.g. when someone applies for disability over and over and over again despite not being approved.) In fact, when fraud does occur, like the case of Judges colluding with doctors and representatives in West Virginia, it’s newsworthy precisely because it’s so incredibly rare.

So, why is the whole system f*cked? Between the complicated way the state and federal reviews work, the interaction between reviews and the Appeals Council, the inefficient and ineffective quotas Judges and attorneys must abide by, and the fact that only Judges who approve “too many” cases get assigned to internal review by SSA, the disability benefits system is wildly inefficient, occasionally discriminatory, self-serving, and antiquated. A Universal Basic Income (UBI) would be much better alternative to our complicated mess of “entitlement” programs, welfare programs, tax breaks, and loan systems. In fact, a UBI could save the U.S. billions of dollars — instead of a mishmash of benefits programs that people have to opt into, or prove their eligibility for — each citizen and resident would receive a basic monthly payment. A very rough, “back of the envelope” calculation suggests that by eliminating the Social Security Disability system in favor of a UBI would allow for a $700 monthly payment to every U.S. adult. If you add in all of the “government benefits” outlined above, it’s reasonable to assume that each of us could receive a $2,000 monthly payment and it would still save U.S. taxpayers money. You can see why this book — and I — advocate for a UBI and universal health care system, for both simplicity and to simply care for people better than we do now.