An Exercise in Patience, Persistence, Reward, and sometimes, Head banging Agony: My Attempt at Navigating the Quagmire that is the Disability Social Security System.

by Matthew Shapiro

Matthew Shapiro

Photo of Matthew Shapiro

My name is Matthew Shapiro and I am from Richmond, Virginia. In the fall of 2013 I graduated from Virginia Commonwealth University with a double major in Interdisciplinary Studies and Sociology with a minor in Psychology.  (I bleed black and gold and I would advise you not to mess with me when VCU basketball is on the television.) In my spare time I do the typical things any 24-year-old does.   I hang out with friends, I attend sporting events, I play video games, and I travel.

My original career path began when I went down the road of being a sports journalist, but that all quickly changed when I participated in my first disability youth event called the Virginia Youth Leadership Forum.  At this event I had two life changing experiences.   First, I realized that instead of sports writing my calling was to become a disability advocate.   Second, This was really the first place where I heard about SSI services.  I began to immerse myself in these two new areas of interest to learn as much as I could about both the advocacy arena and what I would have to do to receive benefits.  Through my advocacy experiences I’ve had the pleasure of being an intern at the United States Department of Transportation through the American Association for People with Disabilities. Additionally, I had the opportunity to intern in President Barack Obama’s White House.

As the title of my article suggests my experience with the SSI system has gone through phases. The first phase that I experienced was patience.   I say patience because when I turned 18 I tried to apply for SSI income benefits but was denied because I had too many assets to my name; a college fund my Grandfather had set up.  I had to first spend those assets and then reapply for benefits.  This is where persistence came into play. After I had worked down the assets, (tuition for college) it took me three visits to Social Security before I was coached by a Social Security employee as to how to navigate the system and was allowed to reapply. I started receiving benefits around the age of 20.

Having been diagnosed with Cerebral Palsy (CP) at birth, I require the use of a power wheelchair for mobility assistance as well as assistance with most personal care activities such as toileting, bathing, and dressing.  The reward phase showed itself in two ways. First, I was able to receive my monthly check in order to help pay for things that I required because of my disability.   Second, because of my benefits I was able to apply for Medicaid services, which has helped a lot with my wheelchair purchases.

The last phase in my experience with SSI income can be described as head banging agony for several reasons. The first and most important one is that the constant tug-of-war that I and many other individuals with disabilities deal with wanting to find steady employment without messing with our benefits.  During my college years when I gained income from some speaking engagements and disability work, as well as, receiving stipends for some of my internship experiences this was not a problem because I was protected under the Student Earned Income Exemption (SEIE). However, when it came to looking for full time employment I always have to be careful cannot have my salary take me over the threshold that would allow me to continue to receive my benefits. People with disabilities want to work but also need their benefits to help them pay for everyday necessities like equipment, medicines, and personal care services. This constant struggle often leads to people with disabilities just choosing not to work to maintain their benefits. This only helps to add to the poor employment numbers for people with disabilities.

The next head banging aspect of the SSI system is always having to be prepared for the review process.   Knowing that one small misreporting of your income could lead to losing some of your benefits can be a very stressful situation. For example, I had a one-time only income source that paid me a very small amount of money, yet SSI recorded it as continuous income, thus reducing my monthly payments until I got the situation rectified. This has happened to me on a few occasions and always requires several attempts to rectify the situation, which is time where I am not receiving my benefits.

A program like CareerACCESS is needed to help protect and guide young people with disabilities around the complicated SSI system.   It is my hope that with a program like CareerACCESS, young people will not have to struggle to make the decision between SSI income and employment.   I hope that soon we can come up with solutions so that the struggles that I deal with when it comes to SSI can be made easier for the next generation of young people with disabilities.  Everyone wants to feel a part of the community and feel like they’re contributing to it.  This includes people with disabilities, who once they are given a shot, often prove to be irreplaceable assets to a community.  The way the system is set up now these people are often held back because of fear of losing something they desperately need.   Let’s stop holding these people back and allow them to be the next great contributors to our society.

About Matthew: Matthew Shapiro graduated, in the fall of 2013, from Virginia Commonwealth University in Richmond, Virginia. While there he created his own degree through the Bachelor of Interdisciplinary Studies program. He integrated Sociology, Public Policy, and Special Education classes to create his Advocacy for Social Justice Degree. He also earned a second major in Sociology and a minor in Psychology.  With this degree Matthew hopes to become a disability advocate.  To gain experience in the advocacy arena, Matthew has participated in several internships including opportunities at the White House and The US Department of Transportation. In his free time Matthew enjoys watching sports, mainly VCU Men’s basketball and Washington Redskins football.  He also loves playing with his dog, VP.  Matthew loves his family very much.  His mother and father Eve and Barry Shapiro and brother Jason have always been supportive of his dreams.  He knows that without the support of his family none of his goals would have been accomplished.

Many people like Matthew face challenges because of current Social Security disability benefits policies.  You can support Matthew and other young adults in similar situations by signing our CareerACCESS petition to reform current federal policies to allow young adults with disabilities to pursue their career goals and achieve independence. You can also follow CareerACCESS on Facebook and Twitter and share our updates and posts.

DISCLAIMER: Readers are invited to add their views and experiences to the entries we post. The blogs we post are not edited; they are the candid and courageous views of real life experiences of young adults with disabilities. Sometimes the blogs we post may not describe current SSI or Social Security rules accurately, but it's important to share how people actually try to navigate these complex and complicated systems.
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