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

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.

CareerACCESS Core Team Members Reflect on Washington, D.C.

Andy Arias and Daniel Mellenthin, two members of the core CareerACCESS team, joined CareerACCESS in Washington, D.C. to advocate for Social Security policy reform. Both took the time to reflect on their hard work and the experience as a whole.

Andy Arias:
The trip to Washington, D.C. was fruitful and enlightening. I’ve been coming to D.C. for the last three years in my role as a disability rights advocate for the Orange County Independent Living Center, and I can honestly say this  trip felt the most outcome-driven. The week in DC included many meetings with influential individuals, as well as Congressional Hearings and meet-ups focused on expanding the awareness of CareerACCESS and engaging key stakeholders in our initiative.  Our core group of advocates were able to speak openly honestly and strategically about the failures of the Social Security system and how its current avenues for success are lacking for individuals with disabilities.

We learned that we need to mitigate the fear of what changing the Social Security Administration would look like. There is consensus that the system is broken, but fear of taking steps to fix it.

Our greatest accomplishment of the week was creating a wave of movement and hope for the young community of disability advocates by letting them know that something is being done and that they need to get involved in creating systemic changes.

I’m very excited about all the progress we’ve made in a small amount of time and grateful to be moving forward in the process.  We strengthened our core group members and extended our membership base. Now, I will be working in the Los Angeles area to engage legislative bodies in our process.

Daniel Mellenthin:
In my second consecutive year coming to our nation’s capital, I didn’t think anything could top the first year. After all, I had met hundreds of powerful and passionate advocates, visited with dozens of legislators to advocate for policy reform that I felt very strongly about (Missouri, US, AND international interests) and was proud to be included in an up-and-coming young professional/aspiring professional “brain trust” of young people with disabilities.

How far we have come from here!

This year, only one later, many of us are sacrificing and making significant, dedicated contributions. Our most recent trip to Washington, D.C. was a perfect example. Despite intermittent constant rain and blasting heat, we visited with several key legislators, making crucial in-roads with staff as well. Our group had significant meetings with AEI, powerful policy analysts and litigators, potential funding sources, and fellow advocates from all across the country. I was able to successfully reach out to dozens of young professionals with disabilities, all from widely varying backgrounds and with unique, compelling stories. 15 to 20 of these young adults expressed strong interest in CareerACCESS, either by asking for how they can follow up with us directly, requesting more information, Facebook/website pages, or, best yet, becoming directly involved in the good fight. A spreadsheet of these contacts will be available to the group shortly.

We had three incredibly productive panels, and although they didn’t go perfectly smoothly, we were able to clearly convey that which we were brought on to do: sharing our stories. Stories are priceless. Stories are not data metrics, memorized and spewed out. Neither are they political rhetoric or buzzwords in overly embellished legislative language. They are real, enticing, sometimes enraging or heartbreaking recounts of real people living real-life.

In front of the NCIL audience, there were some incongruences and areas for improvement that have been addressed. While there were some difficulties faced in this Social Security Disabilty forum, I feel we were able to use this experience to better prepare ourselves for the following panel. Speaking before the Ways and Means staffers, I believe we very poignantly demonstrated what the non-idealized issues at hand were, as well as posting legitimate and viable alternatives to what so clearly isn’t working. We were able to drive home the real life aspects of what we have dealt with, and I was none prouder than when we rolled and walked away from the panel table with the electric air in the normally stagnant room palpable.

For our final panel, we had a very down to earth face-to-face with several high-ranking department heads, ranging from ODEP to DOL, DOJ, Medicaid, EEOC, SSA and notable others. While we dealt with adversity in this meeting as well (gas leak, anyone?), we took initiative and set up a meeting place that would be suitable to accommodate everyone on short notice. Several significant connections were formed here, and it became clear that we have some powerful movers and shakers in policy position, should we provide more concrete terms and definitions for funding, operational costs, clear political asks, phaseout plans, etc. It has become clear that further clarification and uniformity is needed before such individuals are likely to commit, however, but good headway was made.

In short, I feel we did commendable work towards helping others understand what CareerACCESS is, what our initiative seeks to do (and how), and that underlying systemic flaws contribute to the sadly low disability employment rate. I got to know a lot of you better, and the wonderful people in the CareerACCESS team are the reason we will succeed. We are not content, we are not comfortable, and we’re not done yet!

CareerACCESS Goes to Washington

The CareerACCESS team is proud to share that we spent a productive, rewarding week in Washington, D.C. connecting with policymakers, youth activists, and supporters of Social Security reform.

NCIL workshop panelFrom left to right, Dara Baldwin, Ed Lorenzen, Andy Arias, Angel Miles, Daniel Mellenthin, Rebecca Cokley, and Justin Harford. All are seated at a table in the midst of presenting during a NCIL workshop.

To start off the week, on July 27th we participated in a workshop at the National Council on Independent Living (NCIL) conference, “Reforming the Social Security Definition of Disability,” with an incredible line-up of activists:

  • Rebecca Cokley, Executive Director, National Council on Disability
  • Ed Lorenzen, Senior Advisor, Committee for a Responsible Federal
  • Dara Baldwin, Public Policy Analyst, National Disability Rights Network
  • Panel Facilitator – Justin Harford
  • Panelists – Daniel Mellenthin, Andy Arias, and Angel Miles

This well-attended event gave direction to the week ahead as we moved forward to the next big event on July 28th, a Congressional Briefing hosted by the National Council on Disability (NCD), “Re-imagining the Social Security System for the 21st Century.” The briefing included two powerful panels. The first was facilitated by NCD’s Legislative Analyst, Phoebe Ball, featuring the same panelists who had participated in the NCIL workshop. They eloquently shared their personal experiences and frustrations with the current Social Security system and their efforts to pursue successful careers.

youth activists at congressional briefingFrom left to right: Phoebe Ball, Angel Miles, Andy Arias, Daniel Mellenthin, and Justin Harford presenting on their personal experiences with Social Security

The second panel was a response and reflection on the stories shared by the first panelists. It was facilitated by the Former Principal Deputy Administrator of the Administration for Community Living, Henry Claypool, and featured renowned policymakers including:

  • David Weaver, Associate Commissioner for Research, Demonstration, and Employment Support, Social Security Administration
  • Sharon Lewis, Administration for Community Living, U.S. Department of Health and Human Services
  • Janet LaBreck, Commissioner of the Rehabilitation Services Administration, U.S. Department of Education
  • Taryn Mackenzie Williams, Acting Chief of Staff, Office of Disability Employment Policy, U.S. Department of Labor

Congressional Briefing Policymaker panelFrom left to right, Janet LaBreck, Taryn Mackenzie Williams, Sharon Lewis, David Weaver, and Henry Claypool on a panel at the Congressional Briefing.

To read coverage of these panels, you are welcome to view the archive of Tweets created by the National Council on Disability.

Following the NCIL workshop and the Congressional Briefing, members of the team advocated for the importance of CareerACCESS and educated members of both parties about the initiative during several meetings on Capitol Hill, thus demonstrating that Social Security reform is truly a bipartisan issue.

CareerACCESS on the HillMembers of the CareerACCESS team on Capitol Hill.

CareerACCESS founder Neil Jacobson recounts the numerous meetings we attended as great successes. He shares the following insights about the work done by CareerACCESS while in D.C.:

“I was most excited to learn that the NCIL member delegation from Michigan had met with 13 of their 16 Member Congressional delegation and/or their staff informing them about CareerACCESS and Michigan’s interests to  pilot the program.  Bryon was an invited participant when the Michigan NCIL members presented CareerACCESS to staff for House Ways and Means Committee Ranking Member Sandy Levin (D-MI). I was also excited to hear that when Bryon, Amina Kruck and April Reed met with Representative Tom Reed (R-NY), the Congressman expressed interest in assisting us. Meeting with Rosemary Lahasky was very encouraging. She staffs the Human Resources Subcommittee of the House Ways and Means Committee which is the House SSI subcommittee of jurisdiction. She  indicated there is a desire to pilot and demonstrate programs like CareerACCESS. She will follow up and provide more background on the statutory waivers required for our pilot.  We heard similar things when we met with Ted McCann and Amy Shuart, who staff the Social Security Subcommittee of the House Ways and Means Committee. They also told us about Social Impact Bonds as a possible way to fund pilots. The CareerACCESS Core Team briefed  Maura Corrigan on CareerACCESS features and the Michigan interest in being a pilot project state. Maura is the former Michigan Department of Health Services (DHS) Director, now visiting scholar at the American Enterprise Institute, with ties to  Michigan’s Lieutenant Governor Brian Calley.

It was wonderful having Jack Mills from the Insight Center for Community Economic Development, Bob Friedman and David Newville from The Corporation for Enterprise Development (CFED) and Zach Morrow from National Community Reinvestment Coalition (NCRC) join us at the NCD Congressional Hearing. We spoke afterwards about working together to move this agenda forward and possible funding opportunities.

Meeting with Social Security Advisory Board Members and staff, and hearing 3 of its Board members respond positively to the CareerACCESS ideas we presented was very bolstering. Similarly, meeting with Marty Ford and TJ Sutcliffe from The ARC and hearing that they too were most interested reinforced my belief that this is the right time to fully develop and pilot CareerACCESS.

NCIL members and others have reported out from the week’s activities that CA, TN, NE, and MN have expressed interest in being a CareerACCESS pilot project state. Follow-up on these developments is being planned.

Finally, on August 4th, with 170 people in attendance at the Committee for a Responsible Federal Budget SSDI  Proposal Initiative Conference, and over 900 people listening to it, Stephanie read the speech I had written summarizing the paper Anita Aaron, Aya Aghabi Barbara Butz and I are writing. ‘Exploring an Alternative Definition of Disability’ incorporates many of the same principles as CareerACCESS. Being 1 of 12 papers presented, it was great receiving positive feedback.”

Our time in Washington, D.C. has energized CareerACCESS to continue moving forward to enact real change and we need YOU to get involved! As Neil notes,

“Now is the time to seriously move CareerACCESS forward, to fully develop all of its components, pilot it in 3 to 5 states and show its effectiveness. Now is the time to Go! Go! Go!”

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