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Vision '99 International Conference on Low Vision
New York, New York
Dr. Silverstone, Dr. Stuen, Colleagues, and Friends:
I have three important words to share with you: Quality of Life.
It is a phrase that is appearing more often in our everyday life. It is a term that is gaining increasing significance to people everywhere.
And one health-related topic that can significantly affect our quality of life is low vision.
We broadly define low vision as a visual impairment, not correctable by standard eyeglasses or contact lenses, and one that interferes with our ability to perform everyday activities. Daily life becomes complicated when people cannot read their mail, check price tags, recognize faces, watch television, or travel independently. As a result, many people with low vision withdraw from social situations because they can no longer enjoy simple activities such as playing cards or going to a movie. The health of older people with low vision may be compromised when they cannot recognize medications or read labels, or they lose interest in cooking because the microwave panel or stove dials are difficult to read. The possibility of serious injury is heightened when the loss of depth perception places people at a much higher risk of falling.
The inability to see well affects social interactions and can lead to a loss of independence. People with visual impairments may experience frustration and uncertainty. Low vision often places financial, social, and psychological stresses on the families of visually impaired people. The impact of low vision on quality of life can be devastating.
That is why we are here this week. There are approximately 14 million Americans - that's one out of every 20 people - with low vision. Worldwide, the number is about 135 million people. And while there may not be anything medically that can be done, their quality of life can be greatly improved. What can we - as low vision specialists, vision rehabilitation professionals, and researchers - do to help those with low vision? How can new technologies help us - as teachers of the visually impaired and policy makers - improve the quality of life for those who don't see well? What steps can eye care providers - optometrists and ophthalmologists - take in our doctor-to-patient relationships that can make a vast difference in how people view themselves?
Our society's awareness of low vision and what we can do about it is critical. But why is it so important? The answer, simply, is demographics. About one in eight Americans is 65 or older. When you add declining mortality rates and population shifts, such as the "baby boomers," the number of older people will grow dramatically in the years ahead. In 2030, there will be twice as many Americans age 65 and over as there are today. In the developing world, those over 65 will increase ever more rapidly. The graying of population will be a key factor in the increasing rates of low vision and will have a significant effect on every health care system.
The Low Vision Public Education Program
So how do we increase the awareness of low vision? It is an issue that the National Eye Institute takes seriously. The Institute was established by Congress in 1968 to protect and prolong the vision of the American people. Eye disease research supported by the Institute, using taxpayer dollars of American citizens, plays a key role in reducing visual impairment and blindness. This research improves the quality of life for people of all ages, not only for Americans, but for all global populations. Three years ago, recognizing the growing number of people experiencing vision loss, the Institute began developing a new education program on low vision. I am pleased today to announce that on October 19, we will introduce a Low Vision Public Education Program at the National Press Club in Washington, DC.
This new program will increase awareness of low vision and the impact it has on the lives of those who have it. It will bring the message that information and help are available to people with low vision and their families, as well as the health and service professionals who care for them.
Why do we need an education program? Because people with low vision may not know that help exists. Rehabilitative services, environmental modifications, and assistive devices have been shown to help people maximize their remaining vision and use it more effectively. Yet these resources, which exist today, are not often used, for several reasons:
There is a lack of perceived need for services and devices
There is a lack of awareness of the options available
There is a lack of training and education in the use of optical and nonoptical assistive devices; and
There is often a lack of insurance coverage for these particular rehabilitative services
The Low Vision Public Education Program will offer suggestions and information that can lead to improved quality of life for people with low vision and those who care for them.
The Low Vision Public Education Program has two primary audiences.
The first is people over 65 years of age with low vision from eye conditions directly related to longevity.
The second includes members of higher-risk populations, such as Hispanics and African Americans, who are likely to develop low vision before age 65 from eye conditions such as diabetes and glaucoma.
The Low Vision Public Education Program will also reach other groups:
The families and friends of those with low vision
Primary care physicians and other health professionals
Professionals who work with older Americans, such as social workers, assisted living workers, and senior center workers; and
Members of the aging network, including representatives of the National Association of Area Agencies on Aging, the American Association of Retired Persons, and the National Council on the Aging.
Positive, hopeful, and uplifting messages are critical to the success of the new program. These messages will address the issues of independence and the enjoyment of everyday activities. Most importantly, the program will emphasize making the most of remaining vision, not lost vision; emphasize partial sight, not partial or total blindness; and emphasize ability, not disability.
These encouraging messages will be conveyed to the public in a number of ways:
First, a broad-based consumer media campaign. This will include public service announcements for print, radio, and television. It will also include placing stories in newspapers and magazines. Our objective here is to work with the media to highlight the benefits of vision rehabilitation for millions of Americans.
Second is educational materials. These will include a large-print brochure, audio tape, and videotape. They will be distributed directly to the public and also through health care professionals, social service organizations, and other groups that work with and serve older adults. The materials will not duplicate those already developed by others, but rather will complement them.
Thirdly, an outreach program, aimed at health care professionals and social service organizations, will increase professional awareness of low vision issues. The program will include exhibits and presentations at professional meetings and conferences, and placement of articles and editorials in professional journals.
Fourth, through traveling exhibits which will be displayed in shopping malls nationwide. Through interactive displays, the exhibits will increase public awareness about low vision and the available resources. Local grantee institutions and organizations will host the exhibit in each community, providing information on local resources.
And fifth, we will use technology to increase accessibility. For example, the interactive components of the traveling exhibits will be placed on the web site of the National Eye Institute, and a special section on the web site will be devoted to the Low Vision Public Education Program.
The National Eye Institute cannot do this alone. That is why, through our National Eye Health Education Program, we are working in partnership with close to 60 public and private organizations. These groups include Lighthouse International, our host for this conference. We are working closely with the vision community and organizations in the low vision field to ensure that the messages are consistent and that the services are available.
While the National Eye Institute puts the finishing touches on its Low Vision Public Education Program, we are furthering progress in the area of low vision research. As the leading source of vision research funds in the United States, we are currently providing about $5 million of US tax dollars to support about two dozen research projects in the area of low vision.
Some of these projects involve laboratory research. Some of these projects involve training people on how to use low vision devices. Training is important, especially for older adults, who comprise a substantial portion of the visually impaired population. And some of these projects involve research to develop low vision devices. We are constantly exploiting emerging technologies, such as stand magnifiers, which enhance comfort and ease of use. The autofocus binocular low-vision telescope has been improved. Research has yielded several new methods of presenting magnified text on computer screens. Another key advance is the development of new technology, such as route planning database systems and personal guidance systems, to improve wayfinding for visually impaired people.
Research on valid and reliable assessment tools is absolutely essential to improving clinical care. These assessment tools allow clinicians to properly identify and treat problems in performing daily visual tasks. To this end, the NEI has developed a questionnaire to assess the impact of low vision on a person's quality of life. Called the Visual Function Questionnaire, it can be used to evaluate the effectiveness of low vision aids. Most importantly, it is a patient-reported outcome measure.
Our research challenges for the next five years are to:
Develop rehabilitation devices to enhance quality of life.
Determine which rehabilitation approaches are most successful with different types of individuals.
Improve the delivery of these services to those in need; and
Improve our understanding of visual processing so that we can optimize the remaining sight of people with low vision.
Challenges and Opportunities
Research on visual impairment and blindness depends on the contributions of vision scientists, engineers, clinicians, rehabilitation specialists, and above all, patients. Unfortunately, there are few opportunities where such a diverse cross section of disciplines and people can collaborate closely.
That is why we need to establish centers of low vision research. At research facilities, clinicians, researchers, rehabilitation specialists, and patients can come together to develop and evaluate new aids for mobility, reading, and activities of daily living. These centers would encourage close collaboration among a wide spectrum of vision professionals. Vision scientists and engineers could focus on laboratory research. Clinicians could focus on translating the laboratory research to patient care through clinical research. Doctors and rehabilitation specialists could focus on patients and their needs.
These research centers can help answer several important questions:
How do researchers determine the effectiveness of strategies and procedures for rehabilitation of people with visual impairments?
What aspects of visual function need to be better understood to allow visually impaired people to carry out everyday tasks?
What assistive devices and related techniques need to be considered to maximize remaining vision?
What environmental designs and modifications need to be considered to facilitate the daily living needs and independence of people who are visually impaired?
Low vision research centers would place everyone - from investigators to patients - "where the action is." The next five years of research on visual impairment can lead to great strides in improving the quality of life for people with visual impairments. These accomplishments can be realized if the existing research infrastructure is enhanced. We need a broad-based program to educate researchers, clinicians, and engineers from a variety of backgrounds about the availability of these resources. This research will also help us to evaluate the Low Vision Public Education Program.
People with low vision are looking for hope. They are looking for better ways to use their vision. Although services and devices exist, many people with low vision are unaware of them. Information about ways to cope with low vision should be well received. Let's challenge ourselves -with the multiple disciplines represented at this conference - to work together. Each of us has a critical role in this process. Let's use all of our talents and skills to ensure that people with low vision are aware they can maximize use of their remaining sight to maintain their quality of life.
At this time I wish to recognize the honor bestowed upon Lighthouse International to be chosen as host of Vision '99. This triennial international conference has become the latest word in low vision research, equipment, and technology. A wide spectrum of vision functionality is discussed here - from partial sight to blindness. I see evidence of the extensive scope of ophthalmic and optometric disciplines, and I am proud that the National Eye Institute is represented. I send my deepest appreciation to the International Society on Low Vision Research and Rehabilitation for its dedicated efforts to promote research in low vision. I also wish to recognize and thank the World Health Organization for its leadership role in mobilizing awareness and programs to address low vision worldwide.