Winning My 8 Months Battle Against Social Security Through Self-Advocacy

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Winning My Battle 1

On the afternoon of June 3rd, 2015, I got the call I had been hoping and fighting for over the past 8 months – my Social Security benefits will be reinstated and I would be reimbursed.  It was a very long, stressful battle, one that could have been completely avoided if the local Social Security office had kept my case file up-to-date.  Failure to keep my case file current caused them to unfairly penalize me, and those penalties negatively impacted my quality of life for close to a year.

I wanted to share my battle with my readers and supporters because I know that I am not the only one who has had to fight Social Security for errors that were their fault.  I also aim to outline how self-advocacy as a disabled person is crucial by using my efforts as an example – if I was not persistent or able to connect with the right people, my issues would still remain unresolved.

Where It All Began…

Around this time last year, I did a bit of freelance work for two start-up organizations that focused on disabled people.  My employment with both was brief (3 months total), and I reported my earnings to the local Social Security office during my annual review in May 2014.

(Annual reviews are “check-ins” to see if you still qualify for SSI as a beneficiary.  These reviews do not focus on one’s disability status; instead, the reviews focus on the beneficiary’s resources, employment, and financial means.  If a beneficiary is earning money by working and/or have access to resources that are over the acceptable threshold amounts Social Security has outlined, then one’s Social Security benefits are in jeopardy.  A beneficiary could lose their benefits altogether, or have them severely reduced – your disability status does not matter in this case.  Annual reviews are nerve-wrecking for many beneficiaries because of the threat to losing this vital lifeline if you “break” the rules.)

The Social Security worker at the local office noted my employment opportunities in my case file during the review, and requested that I submit documentation (copies of my paychecks and a letter outlining my work history) to them.  I did what was asked of me, and my case file was updated with the new information.

Due to the fact that I had earned income, my SSI check would be reduced (Social Security has a “special” overpayment formula they use to calculate how much one’s check is reduced due to earnings).  I was familiar with this process because I had worked in graduate school as a research assistant, so I was not surprised when my check was reduced in June 2014 for an overpayment amount.

It was not until October 2014 that I received a letter from the local office stating that my SSI check would be reduced for the remaining earnings amount.  Because I did not want my check to be reduced, I decided to pay the overpayment amount out of pocket, to keep my check as it was.

I received a receipt of payment from the local office a couple of weeks later, and I thought everything was resolved.  Instead, this would mark the rollercoaster ride I had no idea I would be forced on for almost a year.

When You’re in the Right And the Government is in the Wrong

In November 2014, I received a letter stating that I still owed the same amount I had paid in October, and that my SSI check would be reduced for that amount in December 2014 and January 2015.  I called the local office, and stated that I had taken care of this matter.  I was told that they did not see anything on record showing that, and that I could file a grievance to state why I should not be penalized when I took care of the overpayment issue.  I submitted my paperwork mid-November, and waited to hear back about what would occur next.

In December 2014, a few days before Christmas, I received a letter stating that I would be having another annual review conducted.  I called the local office about this matter, and the worker who was to conduct this second review wanted to do it right then, and not in January 2015 as the letter stated.  This worker refused to answer my questions regarding why I was having yet another review in less than 7 months of the last one, was very unprofessional in her conduct, and failed to update my file properly and did not send me a copy of the review as she was expected to.

Being frustrated with the local office, I decided to call the National headquarters of Social Security in January 2015 to inquire about my case file.  When I called, I was informed that the local office worker did not update my case file to reflect the case review that was conducted in December; this meant that there was nothing in the system about that phone call in December, which also meant that I would not be able to receive a copy of the case review to ensure that she noted everything properly during the call.

The customer representative at Nationals did inform me of two key matters:  they saw that I did make the payment in October and it was noted in my file that I did so, and that the local office worker did have the authority to answer my questions regarding that manner during the December call – she just refused to do so.

Hit with Another Curveball, & Being Pissed Off Enough to Take Action

Unsure of what in the world would happen next, I waited… and in March 2015, I was hit with a whammy.  I received a letter, and the letter stated that someone at the local office decided to finally update my case file, but the information they inputted was inaccurate.  They had the wrong fair share amount noted on file; this amount was less than the amounts discussed during both case reviews in May and December 2014.  Due to the inaccurate input about my fair share amount, my SSI check would be reduced by almost $250, starting in April 2015.

(For those of you not familiar with the Social Security “lingo,” fair share amounts are what we as beneficiaries are expected to pay to those whom we live with.  Since I live with my Grandmother, I am expected to pay a specific amount to her each month that is my half of the household expenses.  Household expenses are rent/mortgage payments, utilities, food, house insurance, etc.  Using a different “special” formula, Social Security determines what the fair share amount should be once you discuss how much is spent on those expense areas each month.  Beneficiaries are to agree to pay the person(s) they live with each month the fair share amount, and if they do not, then their SSI check will be reduced by that amount every month.)

In a state of franticness from what I read, I called the National headquarters again, and the customer representative took the time to review my file during that call.  They noted that they saw that I did agree to pay my Grandmother the fair share amount each month, and that I have been doing so the whole time.  The only thing that stood out to them was that someone new had inputted the data in my file – nothing else was different, and there was nothing I had did wrong.  They decided to send me a grievance form to allow me the chance to state, yet again, why I should not be penalized by the errors of those at the local office.

At this point, I am beyond livid at the level of mistakes and carelessness of those at the local office, and decided that filling out these forms would not yield the results I needed – now was the time to get others involved.

Taking a Stand As a Self-Advocate & Advocating For My Rights

I contacted someone I knew who was well-versed with the Social Security system, and informed them of what was going on.  They were not surprised at the level of incompetency I encountered at the local office, and they pointed me in the right direction as to what I could do.

They told me to complete and mail the grievance forms I received from Nationals, and take things one step closer by contacting my state representative.  They advised me to let her or him know what was going on, and to assist in reaching out to one of my federal representatives.  They urged me to write a letter detailing everything that has transpired from last year until now, so that both representatives, and the local office field manager, would understand what had happened, and what was left undone.

I contacted my SC State House Representative Mary-Gail Douglas (D) in March 2015, and was connected to her legal aid.  (Fortunate for me, I knew Rep. Douglas from my participation with the local branch of the Democratic Party, and I had interacted with her at functions we both attended.)  I sent the legal aid (and my contact) every piece of documentation I had on hand from May 2014 to March 2015, so that they both could see what was going on.  The legal aid agreed with the suggestion my contact made about writing a letter, and sending it to my federal representative on my behalf.  Late April 2015, the letter was finalized, and sent to the office of U.S. Senator Lindsey Graham, and the office manager at the local Social Security office.

Finally Seeing Results, and Having My Benefits Fully Reinstated

It was the letter to Senator Graham’s office that allowed this emotional rollercoaster ride to end.  I received a swift response from Senator Graham about two weeks after my letter was sent on my behalf.  In the first of 3 letters, Senator Graham stated that he understood the troubles and concerns I had about my case, and that he would look into it.  In order to investigate what was taking place, I had to sign and return an authorization form to give Senator Graham’s permission to review information about me from the Social Security Administration.  I promptly mailed the form back to Senator Graham, and I felt a tinge of hope and relief growing slowly within me.


First correspondence received from Sen. Graham – May 5th. (Click image to enlarge for better view.)

After a week or so, I received another letter from Senator Graham stating that he was looking into this matter on my behalf, and that he would keep me posted.  The hopeful and relieving feelings grew more from that contact, and the burden of dealing with this issue started to lighten.


Second correspondence received from Sen. Graham – May 18th. (Click image to enlarge for better view.)

On Wednesday, June 3rd, I got a call from someone at the National Social Security office.  They shared that Social Security received a letter from Senator Graham about my troubles, and that Social Security has taken action to resolve the issues I had.  I was told that my case file was updated with the correct fair share amount and showed that I have been paying that amount to my Grandmother; my SSI check would be reinstated to the correct amount starting next month; and I would be reimbursed for the monetary amounts I was due from the unfair withholdings over the past 3 months, and the overpayment “double-dipping” from October.


Final correspondence received from Sen. Graham, stating that Social Security resolved my issues – June 10th. (Click image to enlarge for better view.)

Realizing the Battle Was Over, & That I Won

Once I got off the phone with the Nationals worker, I felt a surge of emotions course through me all at once.  The pain and upset I had for the past 8 months eased away, and I could finally take a deep breath, knowing that the battle was officially over.  It was hard to live off the amount I was forced to for 3 months – I barely had enough to take care of the household expenses I was responsible for, and had little left over to buy food and other necessities during that time.  No one should have to endure what I did in these past 3 months, and for the total 8 months.  What kept me from spiraling into a deep state of depression was the fact that I knew I was right – I did everything that was within my powers as a beneficiary, and I had my documentation to prove it.  Everything that happened to me was not my fault; it was the faults of those within the local office who failed to do their job, and instead, penalized me time and time again without justification.  If I had not advocated for myself, there is no telling if or when these wrongs would have been corrected.

Final Thoughts

I am a huge supporter of self-advocacy, and for the past 3 months, I practiced what I preached.  As the old saying goes, “sometimes it’s not what you know, it’s who you know.”  I’m very lucky to know individuals who are in positions of power and/or possess knowledge and information that can assist me with matters I am unfamiliar with.  Self-advocacy is about standing up for yourself when you have been unjustly disadvantaged or discriminated against by those who should know better.  In my case, I was unjustly disadvantaged by those within the local office who did not do their jobs correctly.  It still amazes me how no one at the local office caught the mistakes they were doing, while everyone at the National office saw them, especially when everything is computerized.

Fighting for my rights is not a new concept for me, but fighting for my rights against a government entity like Social Security was new territory.  To win this battle shows me that my voice and my life matters, and that I do not have to fight the system alone.  I am very thankful and grateful to everyone who played a role in helping me resolve this matter, and I hope that my story empowers someone to keep fighting for what is right and what is theirs in similar predicaments.

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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