My Advocacy Story

Elton gives his real-life accounts in his advocacy journey, and discovers vital issues that need attention today, more than ever.

Episode Transcript

(00:00):
The Advocate for Success. Season 1, Episode 6. My Advocacy Story.

(00:08):
Produced by, Elton Thomas.
MissionAdvocate is a store on Etsy, where you can buy apparel to express your advocacy.
Shirts are designed, by the producer of the Advocate for Success Podcast, Elton Thomas.
Empowerment, can be expressed through your apparel.
Visit the MissionAdvocate Store on Etsy, at etsy.com/shop/missionadvocate

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In 2009, I was a member of an organization in St. Louis, Missouri, called The Missouri Council
of the Blind (MCB). I got invited to an event called Legislative Days, where members traveled to
Jefferson City to talk with legislators. I remember my first question being, "What do we talk about?"

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One of the hot topics that year, was a bill they called, the Textbook Bill. The ask was

straightforward (01:07):
to give the Department of Elementary and Secondary Education (DESE) schools, an exemption to copyright laws, so
that they could put textbooks into formats more accessible for people with disabilities, particularly those who are blind.
This topic hit home to me. When I was 13 years old, my school could not get me

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the large print books I needed to succeed in the classroom. The publishing companies, at the time, were
slow, and I never got my books on time or at all. I remember one year, soon after
class started, I was told that my large print books came in, and it turned out that they
were for my previous semester's classes. Since I was not receiving my materials, the best option was for

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me to move away from home, and into a state school, the Missouri School for the Blind.
I wanted to tell my story to every legislator who would listen to me. Unfortunately, this bill
was defeated year-after year; I remember feeling frustrated, that copyright protection for unreliable publishing companies was more

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important, than my education. Advocacy efforts did lead to better accountability in the public school system.
Back-to-school time means getting books, preparing for classes, and getting ready for the school year. For students with
disabilities, however, this can mean ensuring that they can access the educational materials that are necessary for learning.

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Whether purchased from a vendor or authored in-house, curriculum and instructional materials must be available in accessible formats
under the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.
The goal is that all students have access to the materials they need to learn – in

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a format that works for them. This is the goal of Universal Design for Learning, which encourages
teachers to convey information in a variety of ways, so that all students can gain knowledge. Accessible
formats include audio, Braille, eText, and large print text that conforms to accessibility standards.
The National Center on Accessible Educational Materials at CAST provides technical assistance and coaching to ensure

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that all learners have the resources they need to succeed in the classroom and beyond.
After that first trip to Jefferson City, I was energized, and wanted to learn more about our government's systems and
programs, and how they influence the lives of the people they serve. My school was indeed required to give me

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accessible textbooks. However, they could only provide them if they did not break any copywriting laws. Thus, this caused me,
along with thousands of other students who are blind across the country, to have to go to schools for the
visually impaired & blind. In 2010, I started advocating for the Blind Pension program in Missouri. At that time, legislators

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were trying to end the program, and many folks in the blind community did not want to lose this benefit.
Blind Pension is funded through state property tax. Legislators are required to allocate between one-half cent to three cents per
one hundred dollars of all property tax collected. The money is then equally distributed among everyone who qualifies.

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Because Blind Pension is equally distributed among receivers, the blind community receiving Blind Pension, cared very much about folks
getting it who were not supposed to. Personally, I have never been in the Blind Pension program, mainly due
to the fact that I refused to cheat on my sight evaluation. It was pretty widespread knowledge, though, that

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there were people with good sight, and could even drive a car, receiving Blind Pension. And this was taking
funds away from those who were totally blind. One of the Blind Pension requirements is that the person has,
"no usable vision". Instead of trying to find every single person who was abusing the system, I joined an

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advocacy effort, to have a check done on all receivers of Blind Pension, and to have them compare it
to the records at the Department of Motor Vehicle. In 2018, the Department of Social Services updated its rules
to specify that Blind Pension receivers must not have a driver's license or operate a motor vehicle.

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In 2011, the organization I worked for, Lighthouse for the Blind, asked me to give updates to
our entire organization, at our quarterly meetings about what's going on with blind-related advocacy. In 2014, the
Lighthouse adjusted my job description to include, Public Policy Liaison, as an addition to my role as

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Production Supervisor. While my primary duty was to travel once a year to Washington DC, and advocate
for our contracts, mainly through the National Defense Authorization Act (NDAA), and on the top of that
list, was a national issue that impacted people of all disability types, called the SSDI Cash Cliff.

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Benefits of Social Security Disability Insurance (SSDI), provide beneficiaries with disabilities an array of work incentive policies
designed to support them in their return-to-work efforts, with perhaps the most widely discussed policy being the
SSDI Cash Cliff or substantial gains activity rule, which penalizes beneficiaries who earn more than their SSDI

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benefit amount by cutting off benefits altogether once earnings surpass this threshold, (SSA 2015a).
This policy has come to be known as a "cash cliff", since many interested individuals with disabilities often
cease employment at this point when earnings exceed SSDI benefits - potentially dissuading them from ever returning to

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gainful work again!SSDI recipients who decline to join the labor force have profound repercussions for both the economy
and society, including reduced tax revenues and economic output due to lost labor; lost benefits derived from work
such as higher incomes and living standards; community participation through work; and self-worth that comes from being able

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to provide for oneself. Additionally, dually eligible individuals receiving both SSDI and Supplemental Security Income (SSI) benefits who
do not work erode the solvency of both trust funds.As the Social Security Income fund declines, it has
become more challenging to provide full benefits to dually eligible beneficiaries - roughly 1.5 million as of 2015.

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In order to increase their work and earnings potential, these beneficiaries require more robust and more consistent work
incentives than are provided under the current system. SSA provides some incentives through the Trial Work Period (TWP)
and other rules. Still, these policies often have limited effectiveness due to being short-lived or not being applicable

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to all beneficiaries. The TWP allows beneficiaries to test their work effort for 9 out of 60 months;
if their progress fall short, they could be removed from the program, (SSA 2016). Researchers, advocates for people
with disabilities, and members of Congress who are concerned about its effect on participation in the labor market

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have all raised serious objections to SSDI's cash cliff. A recent report by the Bipartisan Policy Center (BPC)
suggested replacing it with a benefit offset starting when earnings exceed $700 a month, eliminating TWP as well.
The BPC report's recommendation is an encouraging first step toward solving our current tax woes. Yet, it must be remembered

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that this proposal penalizes work done by beneficiaries earning between the new threshold and SGA by placing them into a
marginal tax rate bracket of 50% - potentially discouraging work by many beneficiaries, especially the most vulnerable among us.
I received SSDI benefits until I got a steady job, and then I called and had my SSDI

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benefits stopped. Unfortunately, they interpreted this as me admitting that I never should had been receiving SSDI to
begin with, and they began to sue me. Luckily, after one eye exam, they dropped everything.
There is no doubt, that the SSDI cash cliff is causing people with disabilities to reject pay raises,

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promotions, and even, job offers. Progress has been made over the years, but we still have work to
do to end the SSDI Cash Cliff. In 2016 and 17, I received formal Public Policy training through
National Industries for the Blind. It included, how legislation is created, how to present a new bill, how

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the bills travel through the legislative engine, and lots of focus on how to tell a compelling story
to help decision-makers understand the importance of your message. In 2018, a coworker at the Lighthouse, asked me
to get involved with our local Paratransit provider, Call-A-Ride, and advocate for better service.

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Since we had several employees who used Call-A-Ride, I had discussions with all of them, wrote down their concerns, and
created a "one-pager" document with the background, issues, and things we would like to see improved. A representative from Metro
Transit Saint Louis came out to meet with us, and, well, nothing was really accomplished except, that I was invited

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to join a group called, the Disability Transportation Resource Network (DTRN). The DTRN is funded through the Federal Transit Administration
(FTA) from a grant source called 5310. The focus is to create a coordinated system in which agencies with FTA
funding can partner to help fill gaps. Needless to say, these efforts have only been made a little over the

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years; however, there is lots of attention this year from Metro Transit Leadership to bring denials down to zero.
Under the Americans with Disabilities Act of 1990, cities were required to provide alternative transportation for residents who could not
use fixed-route bus services. This service should be complementary, and equal with public transit services, operating at similar hours and

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taking people wherever regular buses and subways do, yet for too long, this has yet to happen. Paratransit services can
often be unreliable, with passengers sometimes arriving far past their destinations or having to wait hours at pick-up locations due
to factors outside transit operator control, such as weather, vehicle breakdowns, and traffic congestion. When such issues arise, paratransit can

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lead to missed workdays or important events and feelings of helplessness among its riders. Though ADA required complementary paratransit has
become more accessible over time in many systems, its structural equality with other public transit remains unsatisfactory.
Some transit agencies have begun offering flexible route deviation and on-demand services for eligible travelers with disabilities (For example,

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Boston MTA, GRTC in Richmond, VA, and Nashville MTA), which may lower per-trip costs while still meeting ADA standards
of providing comparable levels of service equal to fixed route bus services for most travelers with disabilities.
In 2019, I won a national award called, the Milton Samuelson Award, presented by National

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Industries for the Blind. A gave a keynote speech at the luncheon, and gave a
speech at the ceremony. Indeed, this was the most prestigious award I had ever received.
After I had returned home from the trip, NIB's marketing director reached out to me. He wanted to
know if I was interested in becoming a spokesperson for NIB, and I said, "Of course." That summer,

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I was invited back to NIB headquarters to receive Media Relations Training through their Public Relations firm, Golin.
The training was excellent, and I learned a lot about how to prepare myself for interviews, how to
deal with the media, and the essential dos and don'ts of being a public figure.
In 2020, I finished an MBA program at the University of Missouri Saint Louis. I previously received

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a bachelor's degree in Organizational Leadership. I've been asked at times why I did not get a

degree in Political Science, since I've been so involved with advocacy. Well, my answer is simple (13:45):
I
love business, Lean Six Sigma, and anything related to leadership. In the summer of 2020, I earned
a certification as a Lean Six Sigma Master Black Belt, from the Six Sigma Global Institute.

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In my humble opinion, the best way I can advocate is to live it, meaning
that I become a successful person with a disability, who does what he loves. I
will likely always be advocating, just as a volunteer, and now a podcaster.
In 2021, I wanted to expand my advocacy to include people of all disabilities, so, I

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joined the board of directors at Paraquad, the largest Independent Living Center in Saint Louis. In
2022, I became the chair of the Consumer Directed Services Committee and a member of the
Executive Committee. In 2023, I became the vice president of the board of directors.
In 2023, there have been enormous efforts in improving Paratransit in Saint Louis, being led by Paraquad. 2024 will

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be a great year in improving transportation, all because of the people out there who care, and advocate.