Rebecca Sheffield, Ph.D., is a Senior Policy Researcher with the American Foundation for the Blind (AFB) Public Policy Center in Washington, D.C. The AFB Public Policy Center collaborates with policy makers in Congress and the Executive Branch to ensure that Americans with vision loss have equal rights and opportunities to fully participate in society.
She also authors two important and helpful Public Policy Center publications: Research Navigator, a quarterly series that keeps readers informed of user-friendly facts and figures and the latest research pertaining to people with vision loss, and Statistical Snapshots, a one-stop, regularly updated source for statistical facts, figures, and resources about Americans with vision loss.
Maureen Duffy: Hello Dr. Sheffield. Thank you very much for taking the time to speak with us about your work with the AFB Public Policy Center. To begin, can you tell us about your professional path that led you to AFB?
Rebecca Sheffield: Sure! Thank you for inviting me. My path towards my current role really began when I decided to pursue my special education teaching certificate in Texas. For two years, I was the lead teacher in a self-contained elementary special education classroom, teaching students with severe/profound disabilities.
Through that position, I met one of the school district’s itinerant teachers of students with visual impairments (called a TVI) who shared with me the process for earning my TVI certificate in Texas. Within six months, I started the coursework at Texas Tech University and began working as an itinerant TVI, serving a range of students ages 0-21 across several campuses in our large school district. I completed the TVI certificate program and continued on at Texas Tech to receive my master’s degree.
Meanwhile, Dr. Rona Pogrund, my advisor at Texas Tech, recommended that I apply to the National Leadership Consortium in Sensory Disabilities, a doctoral fellowship program funded by the federal Office of Special Education Programs. I was so excited (and quite a bit nervous!) when I found out that I was selected for the fellowship and admission to the Ph.D. program in Special Education at Texas Tech.
While a doctoral student, I became involved in many advocacy efforts, particularly to promote U.S. ratification of the United Nations Convention on the Rights of Persons with Disabilities. In the summer of 2013, I was fortunate to intern at the AFB Public Policy Center in Washington, D.C., an experience that led me to apply for the position of Senior Policy Researcher after my graduation in the summer of 2014.
And I would be remiss if I didn’t also acknowledge that I have a very personal connection to the field. Although it doesn’t relate directly to my career path, it makes me think that perhaps I was destined to be here.
Both of my grandmothers had visual impairment, and, in particular, my mom’s mom, Ruth Peck, was a volunteer braille transcriber and President of the Atlanta Braille Volunteers. Her husband, my grandfather, Ed Peck was a volunteer for the Library of Congress National Library Service for the Blind and Physically Handicapped, repairing braillewriters and talking books. Even my mom volunteered as a braille transcriber when I was growing up, and I vividly remember spending time at my grandparents’ home, listening to Grandma transcribe books upstairs and smelling the grease and oil of Grandpa repairing braille writers downstairs!
MD: Can you tell us more about your role as Senior Policy Researcher at American Foundation for the Blind?
RS: No two days are alike at AFB’s Washington, D.C., Policy Center, but I will try to describe some of my main roles. With respect to policy, I assist and collaborate with Mark Richert, Esq., AFB’s Director of Public Policy and Senior Advisor, Strategic Initiatives. Two of our current policy priorities include H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act and H.R. 729, the Medicare Demonstration of Coverage for Low Vision Devices Act.
We work to get the word out about these initiatives, plan call-in days and events, speak to other advocates, and meet with congressional staff. We also participate in a variety of cross-disability advocacy meetings and organizations in D.C., including the Consortium for Citizens with Disabilities, for which I co-chair the International Taskforce.
Policy and research frequently overlap, and I often spend time digging into statistics, legislation, and academic research in order to answer policy-related questions. Age Is Just a Number: Statistics about Seniors with Vision Loss, our recent Research Navigator, is a good example of this multi-purpose effort, since the statistics I shared about aging and vision loss are an essential part of the renewed national effort to change policies surrounding aging and vision loss. I have worked closely with Dr. Priscilla Rogers, the VisionAware Program Manager, on both policy and research activities related to the aging agenda.
Additionally, I work with AFB Tech and other organizations to apply for grants and conduct research on consulting projects, and I have a few other research projects in the works, collaborating with colleagues inside and outside of AFB.
I am also contacted frequently by members of the media, other grant writers, and other organizations in our field to answer questions such as “How many blind people are there in the United States?” Within AFB, I support all of our departments in survey design, research, and data analysis. This year I have presented, and plan to give, presentations for at least six conferences, and I also work with university personnel preparation programs to provide information and guest lectures for their courses.
MD: As you know, we professionals in the blindness field are asked – with increasing regularity – to provide data and research that can assure funders, policy makers, and government agencies that what we do actually produces results, including improved quality of life and independence. Anecdotes and stories about what we do are no longer sufficient, which I believe is a good trend. That is why I was very excited to read Age Is Just a Number: Statistics about Seniors with Vision Loss, your latest Research Navigator that focused on older adults in the United States, including estimates of vision loss. Can you summarize the most significant points for our VisionAware readers?
RS: This Navigator is the most recent in a series of summaries that I have written to explore and explain population statistics. Many authors have published great research and statistics in the field of blindness and visual impairment, but not a lot has been written about population statistics, and much of what has been written is a little difficult to comprehend if you do not have several statistics courses under your belt!
Thus, the Navigator is written to describe (as clearly as possible) some of the most essential aspects of important data. Often, as with the Age is Just a Number edition, I have to explain that there is a lot that we simply do not know.
With regard to statistics on aging and vision loss, I described:
- different sources for population data, and the differences between the sources. For example, the 2014 American Community Survey estimates that there are 2.9 million people ages 65+ with “vision difficulty,” while the 2014 National Health Interview Survey estimates that 6.1 million people ages 65+ have “trouble seeing.”
- data about the prevalence of specific eye conditions like glaucoma and age-related macular degeneration from Vision Problems in the U.S. by Prevent Blindness.
- findings about visual impairment from the Behavioral Risk Factor Surveillance System, including that early age-related macular degeneration in people 50 years and older is expected to double from the 2006-2008 rates, to reach 17.8 million by 2050.
- And of course I also took some time in the Navigator to discuss H.R. 729, the Medicare Demonstration of Coverage for Low Vision Devices Act and our work on national aging and vision loss issues.
MD: I was especially interested in your reporting of results by year of the National Health Interview Survey (NHIS). From my reading, the numbers and percentages of people who are 65+ with vision problems seem to be decreasing. Can you discuss that?
RS: Certainly. There are a few important points to consider when looking at this data. First, we should remember that this is self-reported data (not reports of numbers of people diagnosed with vision loss by a doctor) and that the “vision loss” question is asked pretty broadly: “Do you have trouble seeing, even when wearing glasses or contacts?” So we are talking about a very broad definition of “vision trouble.”
Also, since the NHIS is based on a relatively small sample size, there is some room for estimation error. In 2014, the NHIS estimated that 13.5% of people age 65+ self-report having trouble seeing; however, the NHIS knows that if they were able to survey everyone in the United States, the “actual value” would probably be somewhere between 12.5% and 14.6%.
So in reality, this could be an increase or a decrease over the previous year. However, if we look at the trend over time (data is available from 1997-2014), we can see that the total number does seem to be going up and the percentage does seem to be decreasing for self-reported “vision trouble.” For self-reported blindness, there does not seem to be a clear trend, and the margin of error (due to the smaller sample size) is even greater.
Unfortunately, these statistics are not very good for telling us why these trends are the way they are – so perhaps they raise more questions than they answer! Certainly the aging Baby Boom generation helps to explain the increase in total population numbers. Perhaps there is a difference in the willingness of Baby Boomers to self-identify as having vision trouble. Perhaps the fact that the NHIS does not count people living in nursing homes is playing a role?
Certainly, more research is needed to better understand these statistics. Looking at the data on specific eye conditions, such as the Vision Problems in the U.S. report, reminds us that the need for more supports, services, and research is certainly growing!
MD: It seems to me that it is quite difficult to gain a truly accurate and comprehensive picture of vision loss among older adults in this country, especially since people who reside in nursing homes or other institutions are not included in most of these estimates. My own research in nursing homes in the 1990s helped me to understand how vastly underreported vision loss was in these institutional settings. What do you think is the best way to gain a true picture of this population of older people?
RS: The best way for me to answer this is to give you an example from own academic research. Prior to coming to work at AFB, in order to complete my Ph.D., I conducted research and wrote a dissertation on quality of life for young adults who are blind.
For this research, I did not create or administer a survey; in fact, I did not analyze any statistics at all. I conducted in-depth, one-on-one interviews with young adults who were blind, purposefully choosing interviewees with diverse backgrounds and experiences. Over hours and hours of interviews, I sat back, asked as few questions as possible, and let them tell me their stories.
Then I transcribed the interviews and read the transcripts over and over to identify the most salient themes, especially themes that were present across all the interviewees. From a statistical standpoint, this is not the most reliable way to conduct research (I had a very small sample size of only six participants), and I cannot make strong claims that my results are generalizable to all other young adults who are blind.
However, when I take the rich and detailed information I gathered from these interviews and combine it with what we are learning from statistics, surveys, and other studies (called quantitative research), I believe that the stories and themes (called qualitative research) help to paint a much clearer picture about the lives and experiences of the very real people behind these numbers.
Over the past year at AFB, beginning with collecting feedback for the White House Conference on Aging in 2015, we have been gathering both quantitative and qualitative data in order to better understand the national trends and circumstances of older Americans with vision loss. While I hope readers will stay tuned to the statistics coming out of AFB, please also be on the lookout for the stories we have to share. And I encourage everyone who wants to better understand the lives of older people with vision loss to reach out and connect with the amazing people who have so many stories to tell and so much to teach us!
MD: Where would you advise professionals and researchers to begin when gathering information about our 65+ population in order to prompt policy change? I think many people simply don’t know where to start because there are so many potential sources of information.
RS: That’s a great question. Of course I hope people will check out Statistical Snapshots and subscribe to our DirectConnect Newsletter, which includes the quarterly Research Navigator. Also, the Journal of Visual Impairment & Blindness will have a special issue on aging and vision loss later this year. However, there are certainly many additional resources available online.
An important factor to remember as you start to do this type of research is that many different researchers and publications are working from, and using, the same original data. So sometimes it seems like you may have encountered a new data source, but you are really just seeing someone else’s presentation or analysis of the same data.
Vision Problems in the U.S. and the Eye Disease Prevalence Study Group
For example, one of my favorite resources, Vision Problems in the U.S. from Prevent Blindness, originated from a meeting in 2001 with the National Eye Institute. From this meeting, the Eye Disease Prevalence Study Group was formed, which worked on a meta-analysis (a type of research that combines data from many smaller studies) conducted across the U.S. in the 1990s.
These researchers together produced many publications, available in the April 2004 edition of JAMA Ophthalmology (formerly Archives of Ophthalmology). Although some organizations and researchers, particularly Prevent Blindness, have used Census data and statistical techniques to update the estimates, these earlier Eye Disease Prevalence Study Group publications remain central to much of the data available today about the prevalence of specific eye conditions among older adults in the United States. Another example of a publication from this data is The Silver Book by the Alliance for Aging Research, in association with the National Alliance for Eye and Vision Research.
The Vision Health Initiative at the Centers for Disease Control and Prevention (CDC)
Also, professionals and researchers should pay attention to the work of the Vision Health Initiative at the Centers for Disease Control and Prevention (CDC). Existing and upcoming reports from this team provide valuable insight – not only about existing data on vision and public health, but also about the challenges of conducting research in our field. With sponsorship from the CDC’s Vision Health Initiative, the Institute of Medicine has recently undertaken a consensus study on vision and public health, which is also likely to produce valuable information for our field.
Additionally, through the Vision Health Initiative, the CDC has awarded funding for a four-year cooperative agreement to establish a national surveillance system for vision loss and eye health to NORC, an independent research organization at the University of Chicago (formerly the National Opinion Research Center). So while we must keep advocating to keep the questions we have in our national surveys and to ask for new data, there should be several exciting new sources for statistics and research in the near future!
Thank You to Dr. Rebecca Sheffield
We thank Dr. Sheffield for her support of VisionAware and for her skilled and enthusiastic research on behalf of blind and visually persons throughout the United States. You can email Dr. Sheffield at RSheffield@afb.net. Keep in touch with ongoing research via the following resources: