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Deepening My Understanding of Social Security, Advocacy, and Disability Rights

head shot of Hilary Travers

I have always loved the idea of working in the policy and research field. As a former teacher of students with deafblindness, I figured out pretty quickly that while I could make a big difference for the students in my classroom, I had very little power to help the students in a school down the street, a school across the state, or a school across the country. I imagined working in the policy field was where I could make the most difference, where I could be a part of the systems change movement. But before I put all my eggs in the proverbial policy basket, I reasoned, I should probably do an internship and determine if this was really the career path I wanted to take. So, I contacted the American Foundation for the Blind (AFB), asked if they were still looking for summer interns, and lo and behold there was one spot remaining. Now, a few weeks after my five-week summer internship has ended, I can say with certainty, my time in the world of policy has only just begun.

While it's called an internship, it felt more like a crash course in politics, policy, research, and everything D.C. Over just five weeks I sharpened my understanding of federal laws and state regulations; I participated in meetings on the Hill, seeing both politicians and policy staff in action; I attended research presentations at a range of conferences that helped me to understand the larger systems and structures in place that affect Americans with disabilities; I was able to participate alongside disability advocacy groups in the fight to vote "NO" and protect Medicaid in the proposed healthcare bill; and, most notably, I spent a lot of time deepening my understanding of Social Security.

I'm going to be honest, up until a month ago, I really didn't understand Social Security. I thought I had a basic understanding of who the social program benefitted, and I had heard, and agreed, with countless other young Americans who complained that "we would never see a dime of Social Security by the time we retire." But after having attended the National Academy of Social Insurance's Demystifying Social Security: 2017 Summer Academy and the Social Security Administration Disability Research Consortium Annual Meeting I realize how uninformed I really was.

As discussed more in-depth in my two part article series, Social Security is one system made up of two funds, providing direct benefits to over 61 million Americans. From retirees and those with disabilities, to children and spouses of the injured and deceased: Social Security provides a foundation of economic security for all. And yes, long-term projections may seem somewhat bleak, but the truth is, the Social Security program is neither broken, nor will it disappear. It is simply a matter of Congress taking action to ensure the solvency of the program. If you too want to deepen your knowledge and understanding of the Social Security Program, Retirement Benefits, or Long Term Projections, I encourage you to read my two-part article on Social Security:

I never thought I would find myself so entrenched in the discussion surrounding Social Security, but the deeper I dig, the more I learn, and the more passionate I become about getting involved. If my time in D.C. taught me anything, it is that the voice of the people matters. If you have concerns over loss of Social Security benefits, call your senators and representatives! The Social Security Administration has provided a summary list of provisions that would change the Social Security Program so that it can remain solvent for the next 75 years (you can find that list here: ). Social Security isn't going away. Therefore, it is critical that we all stay informed and understand the potential changes so that we can advocate for the protections of benefits that support over 61 million Americans today.

In the News
Personal Reflections
Public Policy

Dispelling Misconceptions About Blindness at the 2017 San Diego Maker Faire

George Abbott, wearing sunglasses and a lanyard with a piece of green paper clipped to it.

Kirk Adams and I were pleased to participate in a variety of activities during the 2017 San Diego Maker Faire in Balboa Park, October 7 and 8.

In conjunction with Dr. Melissa Ganus of Quality of Life Experiments, I participated in the Human Library on October 7 at the San Diego Museum of Man. Several individuals representing a variety of communities were brought together to serve as living books to be checked out. The concept was to provide a nonthreatening environment in which people could approach and talk with individuals with disabilities, cancer, and mental illness, among other people, in a way that would not seem appropriate among strangers on the street. One goal was to provide an opportunity to have a dialogue and learn about the experiences of those who seem to live "differently" than most people to gain a better understanding and to ultimately lead to greater inclusion, less stigma, and to dispel myths and misconceptions.

Each volunteer book wore a lanyard around his or her neck to which a sheet of paper was clipped giving a brief title and short description of what he or she was available to talk about. Think of this as a book jacket. When I was first checked out for a discussion I joked that I felt a little like the Little Puppy in the Window being adopted.

I had very interesting discussions with those who chose to invite me to talk with them. On one occasion I was invited to speak with a mother and her fifteen-year-old daughter and on another a mother and her eight-year-old son. In both cases, the parent initiated the questions and the children sat by silently, but before long, they jumped in with questions of their own. On another occasion, two twelve-year-old boys asked to speak with me. Of the dozen or more people I spoke with, I was asked a variety of questions. Here are some of them, along with the responses I gave.

Q: What was the cause of my blindness, when did I become blind and what can I see?

A: I was born blind. My optic nerves did not fully develop. I am able to detect daylight or intensely bright lights up close, but little else. I explain that my eyes move involuntarily due to a condition called nystagmus.

Q: What do colors mean to me?

A: I am not terribly interested in colors for colors' sake, but I have learned the meaning of colors as they relate to me and my environment. For example, knowing what color shirts go best with gray pants, versus brown is important and affects my appearance and people's perception of me as a professional. Healthy grass is green and a clear sky is blue. I learn to attach meaning to colors from descriptions I read in books, what I hear in movies and from talking with friends and family.

Q: What do I wish I could see or have sight to do?

A: Generally speaking, I do not feel like I am missing out on anything in my life due to being blind since birth. If I could see to drive, that would be a benefit; however, I have been fortunate enough to have chosen to live in an area with excellent transportation options and the businesses and services I rely upon most are within walking distance (grocery, convenience, and hardware stores; bank and ATM; dry cleaner; restaurants; movie theater; athletic club). I would be interested to see the grandeur of the Rocky Mountains and experience the Northern Lights and a starry sky. I would like to see my daughter, wife, and loved ones, but again, I do not believe it is necessary to see people to fully appreciate them.

Q: Did I ever feel sorry for myself or despise my blindness?

A: For the most part, I have not felt as if I was less of a person or felt sorry for myself because of being blind. I did, however, have a difficult time around age 16. This was the time my friends were getting their driver's licenses, which brought about a new level of freedom and independence for them that I could not experience. They were also getting their first part-time jobs, which meant they had money to buy clothes, concert tickets and so on. Having an income afforded opportunities for control over what they possessed and experienced. Lastly, dating seemed to be more challenging for me than any of my friends during this time.

Q: Was it hard to date?

A: In short, I would say yes. I think this has a lot to do with how we make our most intimate connections through our eyes and place great value on facial expressions. I do not have the ability to look into someone's eyes and I think that can be uncomfortable and even confusing for some people. Also, many people have the perception that I cannot be an equal partner in parenting or contributing income to the household. Some people believe that I need to be taken care of rather than realizing that I am an adult with all of the responsibilities that entails.

People have actually said to me that because I am blind and know what it feels like to be discriminated against or excluded, I must be very accepting and receptive to dating anyone. This could not be farther from the truth. I find certain personalities, body types, and other characteristics more attractive than others. I have preferences and dislikes, just like everyone else.

Conference Recaps
Personal Reflections
Readers Want to Know

Takeaways from "Medicare Should Pay for Low Vision Devices: Views Through Different Lenses" Teleseminar

U.S. Capitol building

On October 4, 2017 AFB and the 21st Century Agenda on Aging and Vision Loss hosted a teleseminar, "Medicare Should Pay for Low Vision Devices: Views Through Different Lenses." We would like to thank all of the panelists (listed below) and participants who joined us for this informative discussion. A special thanks goes out to VFO who generously sponsored the event.

Following are a few of the main takeaways from the call:

  • Medicare must determine that low vision devices are eligible durable medical equipment (DME), create a coverage policy, code and categorize the devices and related services, and determine a payment level. The exclusion of Medicare coverage of low vision devices goes back 50 years but was made final in 2008 when a new rule issued by The Centers for Medicare & Medicaid Services (CMS) excluded any device with a lens from Medicare coverage. The exclusion is based on the assumption that almost all Medicare beneficiaries would need eyeglasses, so the cost would be prohibitively expensive. Reversing this exclusion will likely require congressional action. One potential path to get there would be HR 2050, Medicare Demonstration of Coverage for Low Vision Devices Act of 2017, which would authorize CMS to conduct a demonstration project to determine the fiscal impact of covering low vision devices.
  • Medicare should cover low vision devices in order to ensure that older Americans can age in place and maintain their independence. By offering devices that promote independence, fewer older adults will need to enter institutions. Additionally, it does not make sense that Medicare covers most other organs and parts of the body but specifically excludes the devices that ensure function of vision.
  • At the core of any effective Medicare benefit is the right device, right provider, and right process. For low vision devices to be effective, individuals must receive appropriate evaluation by a qualified ophthalmologist or optometrist, sufficient training in the use of the device, and receive a tailored package of devices to meet the goal of improving functional vision. Importantly, these services have to be provided by qualified providers working in a team. A physician writing the prescription will work with low vision therapists, occupational therapists, and even family members to deliver the appropriate services. Medicare recognizes the importance of a team approach to care and has options available to cover these services.
  • The vision loss field needs to develop a consensus for action. So far, each organization has had its own policy objectives and strategies for achieving them, but organizations will need to work together to get CMS coverage of low vision devices—sending joint letters to CMS, working together on a demonstration project, or collaborating on a combination of these and related strategies further. One way to move forward is to get involved with Goal Four (Funding for low vision devices) of the Twenty First Century Agenda and Vision Loss. Contact Neva Fairchild to get involved.

A recording and transcript of the entire teleseminar can be found at the following links:
Recording of teleseminar (mp3 format)
Transcript of teleseminar

Be sure to sign up for the AFB DirectConnect Newsletter. The newsletter provides user-friendly, targeted updates and alerts on public policy issues relating to aging, blindness and visual impairment. Stay up-to-date on these important topics and find out about upcoming events relating to aging and vision loss.

Teleseminar Panelists

Public Policy

Breaking News: AFB Applauds Senate Action on Autonomous Vehicles Legislation Benefiting People with Vision Loss

U.S. Capitol building

The American Foundation for the Blind (AFB) applauds Senators John Thune, Gary Peters, Roy Blunt, and Debbie Stabenow for introducing the American Vision for Safer Transportation through Advancement of Revolutionary Technologies (AV START) Act (S. 1885). This groundbreaking bipartisan bill was passed out of the U.S. Senate Committee on Commerce, Science, and Transportation this morning, and includes many specific provisions drafted by AFB that address our concerns about the earlier House version of the bill. Among other key components, the senate bill would:

  • Establish a working group to develop best practices in the design and deployment of highly automated vehicles to ensure their accessibility to people with disabilities (including people with sensory disabilities through accessible user interfaces, as well as those who rely on mobility devices)
  • Ensure that drivers' licensing requirements cannot discriminate on the basis of disability

The legislation does not create new federal regulations but a process for tackling issues.

"This is how the policy process should work," said Mark Richert, Policy Director for AFB. "If we're going to make the dream of driverless cars a reality for people with vision loss and so many others, we need to get rolling right now to get rid of any avoidable technological or legal obstacles—and that's what this bill does."

While automated vehicles are no longer brand-new technology, we are still in the very early days of what they will mean for ordinary drivers. The technical, safety, and legal issues are in some sense a moving target, since the technology is evolving so rapidly. AFB is heartened that accessibility issues are being included at the beginning of the process, when they can be most effectively addressed. Especially as companies start contemplating mass production of autonomous vehicles, what design changes will work for the most people?

To ensure the best possible access and safety features, it is critical that disability advocates and accessibility experts be part of the working group tackling the issues. AFB is proud to continue working side-by-side with our partners in the disability community as well as legislators, auto companies, and driverless car developers to perfect the technology standards and policies that put autonomous vehicles on the road.

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In the News
Public Policy

On the Brink of Health Care Repeal: Tell Your Senators to Oppose Graham-Cassidy Healthcare Proposal

Paper chain cut out of a family of four holding hands. The cut out is on a desk with medical professional, and business tools.

The Senate is moving forward next week with a vote to pass the latest healthcare proposal, written by Senators Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.). The Graham-Cassidy proposal would repeal the Affordable Care Act's (ACA's) Medicaid expansion, premium tax credits, and other beneficial programs. States will be able to waive protections for people with pre-existing conditions. This bill will be devastating to people with disabilities and their families, women and children, seniors, low-income Americans, and threaten access to community living, employment opportunities, & educational supports.

Call your Senators and tell them to oppose the Graham-Cassidy healthcare bill. To connect to your Senator, use the Capitol switchboard, 202-224-3121.

If passed, the Graham-Cassidy healtcare bill would:

  • Reduce federal funding to states by $215 Billion
  • End Medicaid expansion providing coverage for 11 million people
  • Impose per capita caps cuts coverage for children and people with disabilities
  • Eliminate protections on pre-existing conditions and lifetime caps
  • Shift per capita caps and block grants costs to states
  • Weaken current consumer protections that limit consumers' out-of-pocket spending and prohibit insurance companies from capping benefits

Medicaid is a lifeline for 7 million low-income seniors. Medicaid covers 2 in 3 nursing home residents. With nursing home care often costing about $100,000 a year, seniors quickly run through their life savings before turning to Medicaid. The latest healthcare proposal would harm older Americans with chronic conditions because it would allow states to let insurance companies significantly increase premiums for those with pre-existing conditions. Nearly half of Americans aged 50-64 have a pre-existing condition for which they could have been denied coverage prior to the ACA. The bill's changes to age rating and tax credits will dramatically increase the financial burden of older Americans and make coverage significantly less affordable, especially for those with modest incomes, and likely will cause many to go without coverage and necessary care.

Spread the Word: No Cuts! No Caps! Save Medicaid!

Stand with millions of Americans in saying cuts and caps to Medicaid would be devastating to people with disabilities, seniors, women and children, and low-income Americans. Attend as many events as possible, flood social media, call your members of congress starting today!

Friday, September 22

  • Join national call with Senator Casey's staff, CCD experts, and other advocates at 2pm EST
  • Call-in number: 1-719-457-0816. Guest code is 751-426#

Monday, September 25

Tuesday, September 26

  • If you are in DC, please attend press conference sponsored by Senator Casey including Senators Wyden and Hassan and many others advocates
  • 11:30am EST on East Capitol Lawn

Tweet, Facebook, write letters, and send short videos to your Members of Congress with stories of how cuts to Medicaid will have severe impacts to people with disabilities, seniors, women and children, and low-income Americans. Together, we can make a difference!

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