Understanding Our Shifting Health Insurance Landscape – and What It Means for People with Vision LossPosted on 3/27/2017
by Maureen Duffy
Rebecca Sheffield, Ph.D.
Guest blogger Rebecca Sheffield, Ph.D., is the 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 is the author of 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.
In this guest post, Dr. Sheffield explains the components of the American health insurance system, including how people with vision loss make use of public and private insurance options. You can read the full text of her remarks and research at Research Navigator: We've Got You Covered - How People with Vision Loss Participate in America's Health Insurance Systems at the American Foundation for the Blind website.
America's Health Insurance System
Health insurance has been a part of Americans' financial and personal lives since the Great Depression, when hospitals recognized a need for service plans to help patients manage risk while ensuring a guaranteed income (Morrisey, 2013). Today's health insurance system is infamously more complicated than those early systems of the 1930s, though some of the basic principles remain the same. By having people (and in some cases the government) regularly contribute into the healthcare system, whether or not they currently need care, the system is prepared to offer lower costs to those who do need care.
Without insurance, unanticipated medical costs could be financially devastating, forcing people in crisis to choose between lifesaving care and catastrophic debt. Insurance companies also have the ability to negotiate prices for routine services and pharmaceuticals to bring down costs for enrollees. The government and other insurers' desire to keep costs down provides an incentive for them to participate in cost-saving programs, such as preventive care, screenings, and wellness programs.
How Do People Acquire Health Insurance?
American families acquire comprehensive health insurance in one of seven different ways:
- through a current or former employer or union,
- through direct purchase of insurance from an insurance company,
- through TRICARE or other military health care,
- through Medicare (for people 65 and over or those with certain disabilities),
- through Medicaid, Medical Assistance, or other state-run government assistance plans for those with low incomes and/or disabilities,
- through the Veterans Administration (VA), and/or
- through the Indian Health Service (U.S. Census Bureau, 2015).
Since health insurance is about balancing costs and managing risks, health insurance systems work best when many people are enrolled, especially younger, healthier people who rarely incur large health expenses. Following the enactment of the Patient Protection and Affordable Care Act (henceforth "Affordable Care Act") in 2010, as an effort to encourage people to participate in the insurance market, people without insurance have been at risk of financial penalties. However, for most categories of health insurance, there is no automatic enrollment process, and health care premiums are often high, despite efforts to control costs.
Though 20.4 million more people now have insurance than in 2010 when the Affordable Care Act was enacted, a significant proportion of the U.S. population does not have comprehensive health insurance (especially younger, healthier people who feel they are less likely to need medical attention). According to the National Center for Health Statistics, the rate of insurance in the United States (based on data from January to September of 2016) is approximately 91.2%, an all-time high.
How Do People with Vision Loss Make Use of the Insurance System?
In the past, people with some preexisting conditions like diabetes could have been denied comprehensive coverage or required to pay much higher premiums because of their medical histories. The Affordable Care Act prevents insurers from denying coverage based on preexisting conditions; therefore, people with vision loss have equal access to all the health insurance programs previously listed. Estimates from the American Community Survey (ACS) help us understand the extent to which enrollment rates for people with self-identified vision loss (and children whose parents/guardians have identified them as having vision loss) are insured in one or more of the various types of comprehensive insurance programs.
The following estimates are from the 2015 ACS, for civilian, non-institutionalized Americans:
- Overall, 91% of Americans with vision difficulty are insured (90% for those without vision difficulty**).
- 94% of children (ages 0-18) with vision difficulty are insured (95% for those without vision difficulty).
- 78% of young adults (ages 19-25) with vision difficulty are insured (84% for those without vision difficulty).
- 85% of working-age adults (ages 26-64) with vision difficulty are insured (87% for those without vision difficulty).
- 99% of seniors (ages 65+) with vision difficulty are insured (99% for those without vision difficulty).
** This is lower than the previously cited rate of 91.2% because it is based on data collected throughout the year during 2015, rather than the updated estimate from 2016.
Note: These age categories were selected to highlight age differences in insurance eligibility. State-run children's health insurance (CHIP) programs typically provide coverage for eligible children through age 18. The Affordable Care Act enabled young adults to stay on their parents' health insurance plans through age 25. Most seniors become eligible for Medicare at age 65.
Looking at ACS data from 2009-2015, we can see a positive trend beginning in 2014 (the year implementation of key provisions of the Affordable Care Act) with increasing rates of insurance for people with and without vision loss.
- In 2009, 87% of people with vision loss were insured (85% of people without vision loss).
- In 2010, 87% of people with vision loss were insured (84% of people without vision loss).
- In 2011, 87% of people with vision loss were insured (85% of people without vision loss).
- In 2012, 87% of people with vision loss were insured (85% of people without vision loss).
- In 2013, 88% of people with vision loss were insured (85% of people without vision loss).
- In 2014, 90% of people with vision loss were insured (88% of people without vision loss).
- In 2015, 91% of people with vision loss were insured (90% of people without vision loss).
What's Going on With Our Health Care?
Anyone who has turned on the news in the past three months knows that healthcare is a hotly debated topic - from the halls of the U.S. Congress to lively debates at your neighborhood pub.
The population of people with vision loss is predominantly older; therefore, changes that impact Medicare and programs for seniors will certainly have an impact on our field. Let us also remember that 30% of seniors with vision loss also depend on Medicaid, and 10% receive care through the VA system; in both cases these rates are disproportionally higher than for seniors without vision loss.
Children with vision loss also are much more likely than their sighted peers to benefit from Medicare and Medicaid - and school districts are using the Medicaid reimbursement system to help recover some of the costs of providing essential, health-related services which enable kids to attend school (as mandated by the Individuals with Disabilities Education Act). Cuts or caps on Medicaid will shift costs to states, and many states may be unable to maintain non-mandatory services which are vital to children and families.
Young and working-age adults with vision loss have lower insurance rates than the national average (particularly the 19-25 year-olds). As a field, we must investigate ways to educate and encourage enrollment in public/private healthcare programs to promote health and financial wellbeing across the lifespan.
For more details about the Affordable Care Act and about proposed changes/replacement plans, please check out the following resources:
- The new administration has provided its take on coming changes to national health care policy: Providing Relief Right Now for Patients
- The Henry J. Kaiser Family Foundation has published a range of non-partisan summaries in plain language, especially helpful for understanding the current healthcare debates:
- Summary of the Affordable Care Act (P.L. 111-148)
- Summary of the American Health Care Act (H.R. 1628) (introduced in the House of Representatives on March 6, 2017, updated with the latest amendments)
- Side-by-side comparison of key provisions of the Affordable Care Act and the American Health Care Act (as most recently amended).
- Health Insurance Coverage for Americans with Pre-Existing Conditions: The Impact of the Affordable Care Act (PDF)
- The Congressional Budget Office released an estimate of potential budgetary effects of the American Health Care Act (Updated as of March 23, 2017)
- The Affordable Care Act: A Brief Summary (PDF): The National Conference of State Legislatures produced a two-page summary of the Affordable Care Act and its implications.
- The Effect of the 2014 Medicaid Expansion on Insurance Coverage for Newly Eligible Childless Adults by the Rand Foundation.
How You Can Get Involved
If you feel strongly about health care (like we do!), we encourage you to get involved in local, state, and national advocacy efforts. The American Foundation for the Blind (AFB) is a member of the Consortium for Citizens with Disabilities (CCD). Check out the CCD Health Task Force's letters and advocacy materials at CCD Task Force on Health and the CCD Long Term Services and Supports Task Force.
AFB has been working in partnership with the American Council of the Blind and other organizations for many years to increase access to low vision devices through Medicare, especially for seniors, and we continue to look for opportunities to expand comprehensive insurance coverage to include essential technologies and services for people who are blind or visually impaired.
Learn more by joining AFB's 21st Century Agenda on Aging and Vision Loss and reading The Medicare Demonstration of Coverage for Low Vision Devices Act of 2015 Needs Your Advocacy and Support, which discusses a bill that was introduced, but not passed, in 2015/2016.
To subscribe to the DirectConnect Newsletter, go to http://www.afb.org/myafb.aspx and log in (if you have logged in before) or follow the link to "Become a Member" to create a newsletter account. Once you have an account and are logged in, follow the link to "Newsletters," check the box next to AFB DirectConnect, and click "Submit."
Thank You to Dr. Rebecca Sheffield
We thank Dr. Sheffield for her skilled advocacy and research on behalf of blind and visually persons throughout the United States. You can email Dr. Sheffield at RSheffield@afb.net. You can keep in touch with ongoing research via the following resources:
Readers Beware: In a Dangerous and Unregulated Stem Cell Treatment, Patients Lose Sight After Stem Cells Are Injected Into Their EyesPosted on 3/20/2017
by Maureen Duffy
A retina with wet AMD
Of all the eye research developments reported on the VisionAware blog, it is stem cell research for eye disease that generates the most inquiries from our readers. Many readers request information about stem cells, assuming that this is an established and widely-performed treatment for eye disease; others ask for help in finding a doctor who will administer "stem cell treatments."
In response to these inquiries, my message is always the same: "Although stem cell research for eye disease has produced a small number of interesting results, it is in its very earliest safety-testing stages and must be subjected to additional, longer-term, rigorous study and clinical trials, encompassing many more years of closely monitored research. Success in this area is not a foregone conclusion. At present, stem cell research is fraught with numerous stops and starts, high expectations, and frequent disappointments."
It's important to note that even if a clinical trial for eye disease is listed in ClinicalTrials.gov, it does not always mean that the trial has been approved by the United States Food and Drug Administration (FDA) or the National Institutes of Health (NIH). Patients should always consult with their own physicians before seeking to participate in any clinical trial.
Furthermore, if the sponsors of the treatment or trial request payment from the patient to participate, this raises a significant "red flag." Such a situation is called "pay to participate" and raises a number of profound ethical issues, including the lack of equal opportunity for all to participate, and the risk/benefit ratio of participating in the research.
A recent article on the VisionAware blog, titled Our Readers Want to Know: What Is the Progress of Stem Cell Research for Eye Disease? Answer: It Has a Very Long Way to Go, also addressed a number of safety issues surrounding experimental stem cell trials for age-related macular degeneration (AMD), particularly the risks of tumor formation and potential immune rejection.
More urgently, the New York Times has published a detailed report of three women with AMD who suffered severe, permanent eye damage after stem cells were injected into their eyes in an unproven treatment at U.S. Stem Cell, a private clinic at Sawgrass Medical Center in Sunrise, Florida.
About the Stem Cell/Macular Degeneration Report
The New York Times report is based on Vision Loss after Intravitreal Injection of Autologous "Stem Cells" for AMD, a Brief Report published on March 16, 2017 in the New England Journal of Medicine. The authors are Ajay E. Kuriyan, MD; Thomas A. Albini, MD; Justin H. Townsend, MD; Marianeli Rodriguez, MD, PhD; Hemang K. Pandya, MD; Robert E. Leonard, II, MD; M. Brandon Parrott, MD, PhD; Philip J. Rosenfeld, MD, PhD; Harry W. Flynn, Jr., MD; and Jeffrey L. Goldberg, MD, PhD. The authors represent Bascom Palmer Eye Institute, University of Miami, FL; Center for Sight, Sarasota, FL; Flaum Eye Institute, University of Rochester Medical Center, NY; Dean McGee Eye Institute, University of Oklahoma, Oklahoma City; and Byers Eye Institute, Stanford University, Palo Alto, CA.
First, Some Basic Stem Cell Terminology
Here is a brief explanation of some key terms that are used in many types of stem cell research:
- Autologous: Involving one individual as both donor and recipient
- Immunogenic: Causing, or capable of producing, an immune response.
- Embryonic stem cells (ESCs): Can form any cell type in the body. However, they are in limited supply, and – due to their origins – have ethical issues attached to their use.
- Pluripotent: A stem cell that has the power to develop into any type of bodily cell or tissue ("pluri" = many; "potent" = having power)
- Human pluripotent stem cells (hPSCs): The term includes both human induced pluripotent stem cells (hiPSCs) and human embryonic stem cells (hESCs)
- Induced pluripotent stem cells (iPSCs): A type of pluripotent stem cell that can be generated or "reprogrammed" directly from adult cells. Induced pluripotent stem cells require viruses to reprogram the cells, which has the potential to cause cancerous tumors.
About the Harmful Stem Cell Treatment
Excerpted from Patients Lose Sight After Stem Cells Are Injected Into Their Eyes, via the New York Times:
Three women suffered severe, permanent eye damage after stem cells were injected into their eyes, in an unproven treatment at a loosely regulated clinic in Florida, doctors reported in an article published Wednesday in the New England Journal of Medicine.
One, 72, went completely blind from the injections, and the others, 78 and 88, lost much of their eyesight. Before the procedure, all had some visual impairment but could see well enough to drive. The cases expose gaps in the ability of government health agencies to protect consumers from unproven treatments offered by entrepreneurs who promote the supposed healing power of stem cells.
The women had macular degeneration, an eye disease that causes vision loss, and they paid $5,000 each to receive stem-cell injections in 2015 at a private clinic in Sunrise, Florida. The clinic was part of a company then called Bioheart, now called U.S. Stem Cell. Staff members there used liposuction to suck fat out of the women's bellies, and then extracted stem cells from the fat to inject into the women's eyes.
Two of the eye patients sued the clinic and settled, but it has faced no other penalties. [The clinic stated that] it no longer treats eyes, but continues to treat five to 20 patients a week for other problems like torn knee cartilage and degenerating spinal discs.
All three women found U.S. Stem Cell because it had listed a study on a government website, clinicaltrials.gov — provided by the National Institutes of Health. Two later told doctors they thought they were participating in government-approved research. But no study ever took place, and the proposed study on the site had no government endorsement. Clinical trials do not need government approval to be listed on the website. Legitimate research rarely, if ever, charges patients to participate, scientists say, so the fees should have been a red flag. But many people do not know that.
The women in Florida suffered detached retinas, in which the thin layer of light-sensing cells that send signals to the optic nerve pulls away from the back of the eye — a condition that usually needs prompt surgery to prevent blindness. Doctors who examined the patients said they suspected that the stem cells had grown onto the retina and then contracted, pulling it off the eyeball.
"The really horrible thing about this is that you would never, nobody practicing good medicine would ever do an experimental procedure on a patient on both eyes on the same day," said Dr. Thomas A. Albini, an author of the article who saw two of the patients, at the Bascom Palmer Eye Institute. Standard practice, he said, is to treat one eye at a time, usually the worse eye first, so that if something goes wrong at least the patient still has one eye left with some vision.
About Clinical Trials
Most clinical trials are designated as Phase 1, 2, or 3, based on the questions the study is seeking to answer:
- In Phase 1 clinical trials, researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe and effective dosage range, and identify possible side effects.
- In Phase 2 clinical trials, the study drug or treatment is given to a larger group of people to determine if it is effective and to further evaluate its safety.
- In Phase 3 studies, the study drug or treatment is given to even larger groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
- In Phase 4 studies, after the United States Food and Drug Administration (FDA) has approved the drug, continuing studies will determine additional information, such as the drug's risks, side effects, benefits, and optimal use.
More About the Study from the New England Journal of Medicine
Excerpted from the full version of the article, available via subscription only:
We report three cases of vision loss after patients with AMD received bilateral [i.e., in both eyes; in this case, both eyes were injected on the same day] intravitreal injections of autologous adipose tissue–derived stem cells at a stem-cell clinic. ["Autologous adipose tissue-derived" means that staff members at the clinic used liposuction to suck fat out of the women's bellies, and then extracted stem cells from the fat to inject into the women's eyes.] After treatment, in June 2015, the patients were referred to two university-based ophthalmology practices.
Patient 1: A 72-year-old woman with a history of [dry] AMD and a best-corrected Snellen visual acuity of 20/60 in the right eye and 20/30 in the left eye underwent bilateral [i.e., both eyes] injection [into the eyes] of autologous adipose tissue–derived stem cells for the treatment of [dry] AMD.
The patient underwent the procedure at a stem-cell clinic that had an institutional review board–approved research trial listed on ClinicalTrials.gov at the time; however, the written information provided to the patient did not mention participation in a clinical trial, review or approval by an institutional review board, or an association with a trial listed on ClinicalTrials.gov.
The patient reported that she had found the stem-cell clinic through its listing on ClinicalTrials.gov. She also reported that she was under the impression that she was participating in a clinical trial and that she had met the criteria of the trial. She paid $5,000 for the bilateral [i.e., both eyes] procedure. The consent form indicated the risk of blindness. The patient presented to the Bascom Palmer Eye Institute in Miami three days after the intravitreal injection.
Patient 2: [Wet] AMD was diagnosed in a 78-year-old woman with a best-corrected Snellen visual acuity of 20/50 in the right eye and 20/100 in the left eye after she received bilateral injections of anti–vascular endothelial growth factor (VEGF) drugs in both eyes over the course of two years and before she received bilateral intravitreal injections [i.e., injected into both eyes] of autologous adipose tissue–derived stem cells at the same stem-cell clinic.
Like Patient 1, she was aware of the clinical trial posted on ClinicalTrials.gov by the stem-cell clinic. She also paid $5,000 for the same procedure that Patient 1 had undergone. Approximately two days after Patient 2 received bilateral intravitreal injections, she presented to both the Bascom Palmer Eye Institute and to the Center for Sight in Sarasota, Florida.
Patient 3: An 88-year-old woman with a visual acuity of 20/40 in the right eye and 20/200 in the left eye had a history of [dry] AMD with bilateral geographic atrophy and a retinal tear treated with cryopexy in the left eye 30 years before she received bilateral intravitreal stem-cell injections, as described in Patients 1 and 2. Patient 3 received injections at the same stem-cell clinic for $5,000. Patient 3 presented one week after the procedure to the Dean McGee Eye Institute, Oklahoma City.
Discussion: Although numerous stem-cell therapies for medical disorders are being investigated at research institutions with appropriate regulatory oversight, many stem-cell clinics are treating patients with little oversight and with no proof of efficacy. A distinction has been made between clinical studies of stem-cell therapies that are founded on solid preclinical research with strong scientific design and programs that lack preclinical research justification. These programs are often funded by patients at nonacademic centers, and they may not receive FDA oversight if these procedures are performed without the filing of an investigational new drug application with the FDA, which requires extensive safety data.
At least one of the patients thought the procedure was performed within the context of a clinical trial. However, the consent forms signed by all three patients do not mention a clinical trial. The patients paid for a procedure that had never been studied in a clinical trial, lacked sufficient safety data, and was performed in both eyes on the same day. Experimental bilateral [eye] injections are both atypical and unsafe.
The need for oversight of such clinics and for the education of patients by physicians and regulatory bodies is paramount to protecting patients while advancing proper research and innovation.
To Our Readers
Please don't be enticed by unproven treatments, miracle cures, and faulty science. Always consult with your own physician before you enter any kind of clinical trial. Read the latest American Academy of Ophthalmology Statement on Stem Cell Therapy for Treating Eye Disease.
American Foundation for the Blind Leadership Conference Recap: Some Critical Issues for Older Persons with Vision LossPosted on 3/16/2017
by Maureen Duffy
Guest blogger Kay McGill (pictured at left recording a Public Service Announcement) is the manager of Project Independence: Georgia Vision Program for Adults Age 55 and Over. The Georgia Vision Program is administered by the Georgia Vocational Rehabilitation Agency and provides the following services to people who are at least 55 years old and have vision loss or a combined vision and hearing loss:
- comprehensive low vision evaluations by qualified professionals
- daily living skills training by certified rehabilitation specialists
- mobility training by certified instructors
- support groups that offer opportunities to learn from and interact with peers
- assistive devices, such as talking watches, big button phones and magnifiers.
Project Independence is also part of the federal Older Blind Program, which is funded through the Rehabilitation Act. The Older Blind program, also known as Title VII, Chapter 2 of the Rehabilitation Act (Independent Living Services for Older Individuals Who are Blind), is the primary source of federal funds specifically earmarked for vision-related rehabilitation services for older adults. You can learn more about the Older Blind program at Services for Older Persons Who Are Blind or Visually Impaired at the American Foundation for the Blind (AFB).
In this guest post, Kay writes about her experience attending presentations in the aging track at the recent AFB 2017 Leadership Conference, held March 2-4, 2017 in Crystal City, Virginia. [Editor's note: AFB and the Mississippi State University National Research and Training Center on Blindness and Low Vision (NRTC) partnered to offer the conference aging track.]
Two Consistent Aging Themes Throughout the Conference
The aging track led off with two sessions on "Advancing Policy Priorities: Continuing Our National Conversation on Aging and Vision Loss" and included several other topics related to aging and vision loss. In attending the aging-related sessions, I found two themes that were consistent throughout the conference:
- There is serious concern regarding the federal budget and how it relates to serving persons (especially older persons) who are blind or visually impaired. For example, how will the increase in the Department of Defense budget have an impact on grant programs, such as the Older Blind program? [Editor's note: As long as the federal funding for the Older Blind program remains above $13 million, each state receives funding. Should the amount fall below $13 million, discretionary grants award funding to recipients on the basis of a competitive grant review process.]
- How can we meet the challenges of the continuing shortage of trained blindness professionals, especially vision rehabilitation therapists and orientation and mobility specialists?
Facts that Have an Impact on These Challenges
- 6.1 million, or 13.5%, of the population 65 and older has a vision impairment. Approximately 350,000 or .8% of those persons are blind.
- The Older Blind program has been level funded, meaning that there have been no increases in program funding, since 2006.
- $33 million dollars (the total amount nationally) of Older Blind program funding is 1% of the national Vocational Rehabilitation Program.
- The Older Blind program nationwide serves 60,000 seniors. This is "guesstimated" to be less than 2% of those persons who could benefit.
- 17 states are minimally funded at $225,000, meaning that they are capped at this level of funding through the language in the Rehabilitation Act.
Addressing These Challenges
The AFB Twenty-First Century Agenda on Aging and Vision Loss is addressing these critical issues, via specific Agenda goals:
- Goal One of the Agenda: Funding for services
- Goal Two of the Agenda: Ensuring availability and quality of professional services
- You can learn more about these Agenda goals at Goals of the Twenty-First Century Agenda on Aging and Vision Loss.
Another critically important goal of the Agenda is Goal Four: Funding for low vision devices. The purpose of this goal is to initiate a Medicare Demonstration Project to cover aids and devices for people who have low vision. There are a number of issues involved with developing such a demonstration project, however:
- Determining which devices would – and would not – be covered
- Setting the amount Medicare would pay for the devices
- Sufficient "buy-in" from eye doctors
- The fiscal impact of such a project on Medicare
- "Medical necessity" for the devices (such as for reading prescriptions)
- Overcoming concerns about a prior unsuccessful demonstration project.
Helpful Conference Sessions
Advancing Policy Priorities: Continuing Our National Conversation on Aging and Vision Loss
During this session, AFB's Dr. Rebecca Sheffield spoke about the incidence of vision loss in older people and referred people to the following websites for additional statistics and demographic information:
- The United States Census Bureau: American Fact Finder
- The United States Census Bureau: TheDataWeb
- Statistical Snapshots from the American Foundation for the Blind
Another topic covered during the National Conversation session was "Best Practices." B.J. LeJeune from the Mississippi State University (MSU) National Research and Training Center on Blindness and Low Vision (NRTC) discussed the initiative they are working on related to best practices for serving older adults with vision loss. This is being done through the Rehabilitation Services Administration (RSA) Older Individuals Who are Blind-Technical Assistance Center (OIB-TAC) grant.
Their working definition of "best practice" is the following: "Best practices are service delivery strategies or techniques that appear effective based on available evidence; are client centered; are sensitive to the context of the service delivery setting; and are responsive to evolving technology, resources or research."
MSU recently used an "expert panel" approach to develop consensus on best practices related to implementing an effective program, administrative management, and staff qualifications.
Andrew Capehart, Assistant Director, National Adult Protective Services Association, spoke about elder abuse and discussed how elder abuse is defined, the warning signs of elder abuse, the responsibilities of providers, and resources that can help. He explained that types of elder abuse can include all of the following:
- Physical abuse
- Emotional abuse
- Financial or material exploitation
- Sexual abuse
- You can report elder abuse at the National Adult Protective Services Association website.
Read Dealing with Crime or Domestic Violence as a Person with a Disability for more information on identity theft, domestic violence, and self-defense techniques.
Cultural Competence and Linguistic Competency
Suzanne M. Bronheim, Ph.D., Associate Professor of Pediatrics, Georgetown University Center for Child and Human Development, spoke about considerations in serving older individuals with vision loss from culturally and linguistically diverse groups. Her key points included the following:
- Acknowledge cultural differences
- Be aware of one's own culture
- Acquire cultural knowledge and skills
- Be aware of the connotation of "independence," depending on the culture
by Maureen Duffy
How the world can look
with low vision
A query I receive frequently from readers is how to describe their low vision or vision loss to fully sighted family members and friends, who may find it difficult to understand how functional vision can vary significantly from one day to the next, or from daytime to nighttime.
While some basic explanations do exist (cataracts = blurriness; glaucoma = "tunnel" vision), they rarely suffice, and accurately describing what one can – and cannot – see has remained an elusive and unsatisfying quest.
Now, however, a new advocacy and fundraising partnership between Prevent Blindness and See Now has developed a no-cost interactive online tool called Sight Simulator. It approximates the experience of having cataracts, glaucoma, or retinopathy by superimposing their functional visual effects on your choice of Google Street View images, including an image of your home, agency, or place of business.
About the Vision Simulation Tool
The Sight Simulator is a component of the joint Prevent Blindness and See Now outreach partnership, which is raising public awareness of vision loss and urging the 115th Congress of the United States to increase funding for two critical vision programs:
- Provide at least $3,300,000 in Fiscal Year (FY) 2018 to maintain and expand vision and eye health efforts at the Vision Health Initiative (VHI) of the Centers for Disease Control and Prevention (CDC).
- Provide at least $3,500,000 in FY 2018 to establish a children’s vision and eye health coordinating center at Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB). Currently there is no Congressional appropriation to MCHB to address children's vision.
You can read more about the campaign at See Now: Unlocking Eye Care for 15 Million Americans Who Need It the Most at the Prevent Blindness website.
What the Sight Simulator Can Do
You can use the Sight Simulator (a) to describe your own vision loss for your friends and family, or (b) use it to experience for yourself what it means to live with low vision. When you input a street address, the Sight Simulator provides a Google Street View image that you can modify to simulate moderate to severe cataracts, glaucoma, or retinopathy.
Here is a Google Street View image of the American Foundation for the Blind (AFB) Center on Vision Loss in Dallas, Texas:
Here is the same image of the AFB Center on Vision Loss as viewed on Sight Simulator with moderate vision loss from cataracts:
Here is the AFB Center on Vision Loss as viewed on Sight Simulator with advanced vision loss from cataracts:
Glaucoma is a group of eye diseases that damage the optic nerve, which creates problems with glare and reduces peripheral or side vision, also called "tunnel vision."
Here is a Google Street View image of the American Foundation for the Blind (AFB) Center on Vision Loss in Dallas, Texas:
Here is the same image of the AFB Center on Vision Loss as viewed on Sight Simulator with moderate vision loss from glaucoma:
Here is the AFB Center on Vision Loss as viewed on Sight Simulator with advanced vision loss from glaucoma:
Retinopathy is any disease of the retina, including diabetic retinopathy. The retina is the light-sensitive tissue that lines the inside surface of the eye. Cells in the retina convert incoming light into electrical impulses, which are carried by the optic nerve to the brain, which finally interprets them as visual images.
Here is a Google Street View image of the American Foundation for the Blind (AFB) Center on Vision Loss in Dallas, Texas:
Here is the same image of the AFB Center on Vision Loss as viewed on Sight Simulator with moderate vision loss from retinopathy:
Here is the AFB Center on Vision Loss as viewed on Sight Simulator with advanced vision loss from retinopathy:
More About the Sight Simulator
Excerpted from Sight Simulator shows you what it's like to be legally blind, via CNET:
Ever wondered how the world looks to those with glaucoma or cataracts? A new interactive site lets you see for yourself.
The Sight Simulator is part of a campaign called See Now, aimed at increasing awareness of vision loss and calling for more Congressional funding to combat it in the United States. The Simulator places filters that mimic the effects of cataracts, glaucoma, and retinopathy on top of Google Street View images, enabling visitors to the site to move a slider and increase the severity of each.
The minimum setting on the site for all three conditions shows a view matching legal blindness. It's defined in the United States as central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less, according to the American Foundation for the Blind.
"Legal blindness is not binary," the See Now site points out. "For most people with vision impairment, it's not a matter of seeing nothing versus seeing clearly. The reality is somewhere in between."
"We believe when people experience what it would be like to lose their sight, from seeing what their own street looks like with poor vision, they will appreciate the problem in a way they never did before," Erin McCallum of the See Now campaign said in a statement. "Hopefully this will motivate many people to look after their own eye health and push them to take action to help prevent blindness in others."
What the Oscars Can Learn from VisionAware About Print Legibility and Effective Lighting for ReadingPosted on 3/6/2017
by Maureen Duffy
As many news outlets have reported by now, actors Warren Beatty and Faye Dunaway announced the incorrect Best Picture winner at the 89th Academy Awards ceremony on February 26, 2017. Mr. Beatty opened the envelope and Ms. Dunaway read the winning picture as La La Land instead of Moonlight, the actual winner.
How did this happen? Many explanations have been advanced, including human error by a tweeting and distracted Brian Cullinan, the PricewaterhouseCoopers accountant who handed the incorrect envelope to Warren Beatty backstage.
Another possibility, however, is that the envelope – which was redesigned this year – was difficult to read, due to a combination of poor contrast, poor print legibility, and insufficient lighting backstage.
Here's more about that possibility from Was Oscar's best picture disaster simply the result of poor envelope design?, via the Los Angeles Times:
One of the most epic mix-ups in the history of the Academy Awards could have been the result of a faulty envelope design as much as bad backstage distribution.
Warren Beatty and Faye Dunaway were there to present the last award of the night, the Oscar for best picture. However, instead of the envelope for best picture, they were given a second envelope for lead actress, which was won by Emma Stone of "La La Land," causing Dunaway to announce that "La La Land" had won best picture, instead of "Moonlight."
A new envelope design — red with the category embossed on the front in gold lettering — could have been a factor.
This was the first year since 2011 that Marc Friedland Couture Communications of Los Angeles did not design and print the Oscar envelopes. Said Friedland, "I can't say our envelope would have prevented it, but we put measures in place to make it as foolproof as possible, such as really legible, very big type."
Friedland's envelopes were gold, affixed with large ecru labels stating the categories in a proprietary typeface that provided contrast and legibility. This year's new cards, with the lower contrast gold printing on red envelopes, could have been hard to read in the lighting backstage.
"We always were concerned about the fact the presenters could get them out of the envelope easily and that they were easily legible," Friedland said. "I think it's … a flaw in the design and human error that contributed to this."
Examples of Academy Award Envelopes
This is the gold Oscar envelope from the 2016 ceremony. The award title is in large print, with good contrast between the print and background:
This is the red Oscar envelope from this year's ceremony, held by presenters Warren Beatty and Faye Dunaway:
This is a close-up view of this year's red Oscar envelope. Note the very poor contrast between the deep red envelope and the burnished gold print:
What the Academy Awards Can Learn from VisionAware About Print Legibility
Use Large Print and Strong Contrast
The standard font size for large print is 18 point. When advising your employer, senior center, or church, for example, on how to make brochures, newsletters, schedules, menus, programs, and other materials accessible for you, the best size type for these items is generally 18 point, which can be produced by regular printers.
It's also best to use bold black print on a matte (not glossy or shiny) white or cream background and limit the use of graphics. Also, avoid using italics or all capital letters. Generally, lower-case lettering is easier to read.
Use plain, simple, "sans-serif" fonts, such as Arial or APHont (available online through the American Printing House for the Blind).
Serifs are details on the ends of some strokes that comprise letters and symbols. A typeface with these strokes and details is called "serif." A typeface without these details is called "sans-serif," from the French "sans," meaning "without." In many cases, the use of fonts with serifs can reduce the readability of print for people with low vision. Therefore, sans-serif fonts are the recommended print options.
This is an illustration and comparison of serif and sans-serif fonts:
Strong contrast between the print and background is very important. Light lettering, such as white or light yellow, on a dark background may sometimes be easier to read than black lettering on a white or light-colored background. To enhance print contrast, you can also use a yellow acetate overlay, or filter to enhance the contrast between the print and page color.
You can learn more about large print and print legibility at Getting Started Kit: Tips for Making Print More Readable (PDF) and Using Large Print at VisionAware.org.
What the Academy Awards Can Learn from VisionAware About Effective Lighting for Reading
There are a number of different types of light, each with its own characteristics. When you go to the store to purchase a new lightbulb, it's helpful to pay attention to three terms that you can find on every lightbulb box:
- Lumens: the amount of light that a lightbulb produces. The higher the lumen number, the more light the bulb will produce.
- Wattage: the amount of electricity a lightbulb uses. The higher the wattage number, the more electricity the bulb will use.
- Kelvin or K rating: a measure of "color temperature." A Kelvin or K rating of 2,700 produces a warm, or yellowish, light; a K rating of 4,500 produces a white light that is closest to true daylight; and a K rating of 5,000 or above produces a cool or "bluish" light.
- For most people with low vision, a Kelvin rating of under 5,000 is usually recommended. This is partly because there will not be any blue light or ultraviolet if a lamp is under 5,000 K. Also, the lamp will probably be better contrast if it is under 5,000 K.
- The most important terms for people with low vision are lumens and Kelvin rating.
Incandescent Light (Basic Light Bulbs)
Incandescent light emphasizes the red/yellow end of the visible light spectrum, which is closer to natural sunlight. The light from an incandescent light bulb is also very concentrated. That makes it best for "spot" illumination on close work, such as reading, sewing, and crafts. It is not recommended for overall room lighting, since, like sunlight, it tends to create glare spots and shadowy areas.
Please note: At the end of 2014, the United States phased out production of all incandescent bulbs. Until supplies run out, these bulbs will remain on store shelves alongside the energy-saving alternatives that are replacing them.
Fluorescent Light and Compact Fluorescent Lamps (CFLs)
Fluorescent light and CFLs produce less heat, use less energy, and are more cost-effective than incandescent bulbs. Fluorescents are usually recommended for overall room lighting because they don't create glare spots and shadows. A CFL is a compact version of a fluorescent tube that is curved or folded to fit into the space of a standard bulb. Look for CFLs with a K rating of around 4,200 but under 5,000.
CFLs have some drawbacks, however:
- CFLs take time to warm up and achieve full brightness.
- Some models can't be used with a dimmer switch.
- Because they contain a small amount of mercury, CFLs must be recycled at a hazardous materials facility. Also, it's not easy to avoid mercury contamination when cleaning up broken CFLs.
Light-Emitting Diodes (LEDs)
LED bulbs produce minimal heat, are very energy-efficient, and achieve full brightness instantaneously. The energy-producing part of the light, the diode, is encased in a hard plastic cover that looks like a standard bulb and will not break easily. LED bulbs do not contain mercury, have a life expectancy of 50,000 hours, and work best for concentrated lighting on close work in a flexible-arm lamp with a shade that directs the light downward. They are not recommended for overall room lighting. Look for LEDs with a K rating of around 4,200 but under 5,000.
Some people prefer halogen light because it is brighter, "whiter," and very concentrated. It is used in lamps, track lighting, and ceiling fixtures, and it is also available in adjustable gooseneck and flex-arm lamps.
There are some disadvantages to halogen light, however:
- Since it is hotter and more focused than other types of light, it is not recommended for prolonged close work.
- When used in a reading lamp, the bulb must be shielded by a piece of protective Plexiglas or durable plastic.
- It produces intense heat and can cause fire and severe burns if used incorrectly. Always follow the manufacturer's safety precautions when using halogen lighting fixtures.
This type of lighting contains some combination of CFL, LED, and fluorescent light. For example, some lamps combine CFL, LED, and fluorescent lighting in the same fixture. Some adjustable flex-arm lamps contain a fluorescent "ring" (called a Circline bulb) that surrounds a CFL or LED light. Combination lighting is usually the most comfortable light for everyday activities because it provides a fuller-spectrum light that more closely resembles natural sunlight.
Are you listening, Oscars? We hope so!
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