This is a post I’ve been wanting to write for a long time, but I guess I wanted to wait and find out how the story ended. Last month, FIVE YEARS after I first applied for Social Security Disability Insurance, that day finally came. Conveniently, right after receiving the final decision, we had a week-long vacation scheduled and we celebrated having some closure on this very long process. We visited Bryce Canyon National Park, ran the Bryce Canyon 50 mile ultramarathon, and then headed to Zion National Park.

Seeking SSDI is a painfully slow process, and because mild traumatic brain injury is an invisible disability, there is a very high rate of denial. If you are preparing to file, you are preparing for an ultramarathon. Things will not go as planned, but just keep putting one foot in front of the other. All the things you do in your preparation to file will help your chances of successfully getting across that finish line.

Social security disability insurance is a program most workers pay into. If you work, it comes out of your paycheck. It seems like such a simple concept – work and pay into the program, then if you get injured and cannot work, you can collect what you have put into the program.  It is important to note, that the payment you receive from SSDI is nowhere near your previous pay. The SSDI monthly benefit is based on earnings prior to disability, and averages between $800 and $1,800 per month. So you won’t exactly be riding the gravy train and there is a lot of incentive to return to work once you are able. More exact information can be found in the Social Security Administrations Disability Brochure. 

Here is a brief summary of the questions used to determine if you are disabled:

1. Are you working?

If you’re working and your earning more than ~$1200 each month, you won’t be considered disabled. The amount changes each year. And yes, that is less than if you worked 40 hours a week at minimum wage, so I’m not sure how anyone is supposed to survive on that income.

2. Is your medical condition “severe”?

Your medical condition must significantly limit your ability to do basic work activities — such as lifting, standing, walking, sitting, and *remembering* — for at least 12 months.

3. Does your medical condition meet or medically equal a listing?

The list of impairments describes medical conditions that are considered severe enough to prevent a person from doing any gainful activity. Disability will be granted if a medical condition meets the criteria of a listing.

4. Can you do the work you did before?

The state agency decides if a medical condition(s) prevents the performance of past work.

5. Can you do any other type of work?

The state considers age, education, past work experience, and skills that could be used to do other work.  It doesn’t matter what your previous line of work was. At my first hearing, I was told I could be a house cleaner or parking lot attendant. At my second hearing, I was told I could be an office helper or a photocopy machine operator. The key here is not the work itself, but can you actually sustain consistent gainful employment (i.e. show up for some type of work every day and earn more than $1200 per month). For most people with traumatic brain injury, it isn’t a matter of “can you work”, but “how long” and “how consistently”. I could have definitely been a house cleaner for an hour a day, but there was no job I could have done for 8 hours a day.

My SSDI Process

When I initially applied for SSDI, I thought I would need financial help for a few months. I thought for sure I would be back to work soon. I had no clue how long my recovery would take, and how many years it would be before I could get back to work. If I had known, I would have been much more thorough in my initial application. For someone with a traumatic brain injury, the application process is difficult and I strongly encourage you to find an advocate to help you deal with all of the paperwork.

Here is my timeline:

May 2016: I submitted my initial SSDI application.

March 2017: Yes seriously, it took 10 months to receive my first denial.

April 2017: Hired a lawyer and filed an appeal. Federal law limits the fees charged by Social Security disability attorneys to 25% of your back pay, or $6,000, whichever is lower. Back payments are benefits that accrued while you were waiting for Social Security to approve your case.

May 2017:  The lawyer told me I needed neuropsychological and functional capacity evaluations. These are expensive tests, and not routinely covered by insurance. I spent $1,000 out of pocket for these tests (more information below).

June 2018: The first hearing…and yes, it took 14 months to get the hearing after filing the appeal. My lawyer asked me numerous questions, but the judge asked me only one. “Did you actually run 100 miles”, and right there I knew what the decision would be. For the record, ants can run, toddlers can run. Neither can hold down a full-time job. Running requires very little in the way of focus, memory, or decision-making. It is outdoors where it is quiet and there are no harsh fluorescent lights.  That is why running was a huge part of my recovery, and what most of this blog is all about. Running is also why I was denied disability.

October 2018: No big surprise, I received my denial.

November 2018: We filed an appeal for review of the case.

May 2019: I returned to work 15 hours per week (three 5 hour shifts) and now the case becomes a “closed” case, seeking only back pay for the years of missed work.

July 2019: Denial from the Appeals Council. My lawyer then found another lawyer willing to take my appeal to the federal level. I paid $400 to file this federal appeal, as well as signing a new (much larger) fee agreement with the federal lawyer.

September 2020: Federal appeals court ruled in my favor based on the determination the judge did not consider all the supporting medical evidence. They agreed the case was mishandled and sent it back to the state level. YAY!

March 2021: Second hearing…with the same judge. This time around an internal medicine specialist and a psychologist were present and reviewed all of my medical records. They never met me, and I did not get to speak to them. It was so bizarre to hear people talking about me based solely on what other medical professionals had written. Among other things, the judge asked them questions about whether I could legitimately run long distances and not be able to work. They both stated that all of my medical records were consistent with a disability (as all the other medical specialists had been saying all along), and they had no reason to believe I was capable of gainful employment. I cried.

May 2021: Fully favorable decision, and more crying. I still have no idea how much the payment will be. From my understanding, it will get paid out in installments over a couple of years, minus taxes, state lawyer fees, and much higher federal lawyer fees. So all you would-be-long-lost-relatives can just hold your horses because I didn’t just win the million-dollar COVID vaccine lottery. But even $100 is more than I have received so far, so I’ll take it. More than the money, after all the denials, the validation of having someone say “yes, we agree that you were not capable of working” is priceless.

Final Thoughts

We are incredibly fortunate to have had family financial support to get us through the early years. For so many people, waiting years to receive help isn’t an option. People lose their homes, have no cell phones, no mailing address, no internet. How can people possibly navigate this process and continue to advocate for themselves without these resources? How can these people pay thousands of dollars to have the testing done to support their case, or pay the fees for a federal appeal?

Regardless of the outcome, there is a sense of closure with finally having the appeal process over and done. My case had a happy ending, but many do not. It all comes down to how well symptoms were documented by medical professionals, the luck of the draw with what judge is seeing your case, how long you are able and willing to keep fighting, and unfortunately – having the financial resources to keep up the fight.

The best odds of success come through documentation, documentation, documentation, and also:

• A lawyer
• Neuropsychological evaluation (with a psychologist)
• Functional capacity evaluation (with an occupational therapist)
• Routine recheck appointments with your physician

Even if nothing has changed, just go check in with your physician every few months, and have it documented that you are still having symptoms. It is important that your physician make notes about your symptoms, and I recommend explicitly telling them why it is important (i.e. tell them you are filing for disability and need ongoing documentation). The judge and medical experts can only make a ruling on what is written in your medical records.

The last thing that strengthened my case was actually returning to work, and “failed work attempts”. I had worked a couple of shifts back in 2017 at my old clinic. It didn’t go well, but it was a good test. Then in May of 2019, I started at 15 hours, then after a few months, I increased to 18, then 24 hours. That was too much and I had to drop back to 18 hours. I continued there for a few months, then increased back to 24 hours, then up to 32 hours. That was too much and I had to drop back to 24 hours. Private disability insurance can often work differently, and any work will terminate your benefits. SSDI, however, encourages you trying to return to work. If you manage to get SSDI, the Ticket to Work Program gives you 9 months to try returning to work without losing your benefits.

This entire experience made me a big advocate for making sure you have private disability insurance if you are able to get it. The great irony is that I had been in the process of setting up a policy when we left on our vacation where the bike crash happened. As soon as I qualify, I will try again.