Critical Issues Confronting the Blindness Field: Can Providers and Consumers Agree?
Print edition page number(s) 453-457
Recently, I was invited to speak to a gathering of service providers about issues confronting the field of visual impairment and blindness from a consumer's perspective-a perspective that I believe is very different from my own views, even though I am blind myself. Although I am a professional in the field of blindness and visual impairment, I am visually impaired and therefore simultaneously hold the perspective of a professional and that of a consumer. In preparing my remarks, I decided to contrast and compare my observations of the critical issues based on my own point of view as a service provider with my point of view as a blind person. The following views, which are adapted from that speech, are mine, but they also reflect what I have heard from other service providers and blind consumers. I have done no surveys and conducted no research, although I asked the blind professionals working at the American Foundation for the Blind for their points of view. I have based my opinion on my observations and the reactions I have received to the talks I have given over the last 20 years on my views of the critical issues confronting our field.
It should be noted that in this discussion of critical issues, I do not make reference to personal issues, such as "service providers never make enough money"; nor will I attempt to represent the views of people who have not yet undergone rehabilitation services, whose critical issues may be very different from the ones identified below.
The service provider's point of view
In no particular order, the following are my view of the five most critical issues affecting the field of visual impairment and blindness from the service provider's point of view.
Personnel shortages and encroaching outsiders
We in the blindness field have always believed that direct services should be provided by specially trained personnel who know about the needs of visually impaired people and how to meet those needs. The field is experiencing a severe personnel shortage among orientation and mobility instructors, vision rehabilitation therapists, educators of students who are visually impaired, and low vision specialists. We are witnessing encroachment by outside professionals, such as occupational therapists and special educators, many of whom do not possess backgrounds in working with people who are blind or visually impaired. Should we fight them or welcome them? Should we offer them training and assistance or ignore them?
By my use of the word "encroachment," you might infer that I believe these outsiders are bad for our field. In fact, I believe it might be in our best interests to welcome and offer training to them. All of us, as stakeholders and supporters of the Medicare Low Vision Rehabilitation Demonstration Project, are striving to prove that our disciplines are well-suited for the rehabilitation of individuals with low vision and deserve Medicare funding. We should continue to support our university preparation programs and certification through the Academy for Certification of Vision Rehabilitation and Education Professionals. Through means such as these, the numbers of professionals serving visually impaired individuals will grow.
Consumers who are blind generally do not view personnel shortages as one of the five major issues confronting the field of visual impairment and blindness. Some blind people would say, "As long as a trainer is visually impaired, he or she is qualified." Others would object to the emphasis of the term "professional" in this context and feel that such titles are overrated. Thus, consumers in general, and perhaps naturally, are not as concerned with professional issues as we service providers might be.
Most prognosticators project a dramatic increase in the numbers of visually impaired people, especially among newborns and the older population. If service providers are having trouble serving the current number of people who are visually impaired, how will we be able to serve greater numbers in the future? We are also serving more people with multiple disabilities. For example, cortical or cerebral visual impairment (CVI) has been called a new epidemic in visual impairment, affecting the very young to such an extent that it's viewed as the most common cause of visual impairment among children in developed nations. The numbers of individuals with traumatic brain injuries are growing as well. A burgeoning number of those with visual impairments relating to brain damage are veterans returning from the wars in Iraq and Afghanistan. We are also serving more people from diverse cultural backgrounds. We need to be aware of how culture affects the individual who is visually impaired, as well as his or her family.
Consumers have similar concerns; they want the blind population of the future to be served and served well. But regardless, the issue of demographics would not appear among the five biggest issues from a blind person's point of view.
Blindness is no longer a compelling cause for the general public. Concerns about the environment, homelessness, and the development of at-risk youths are grabbing the headlines and receiving the resources. We must advocate for additional governmental and nongovernmental funding, and we must support this advocacy by demonstrating the increasing demand for visual impairment services and proving that our services are effective. In other words, we must demonstrate that an investment in services for blind and visually impaired people pays dividends. Consumers and consumer organizations are supportive of the need to ensure sufficient funding for services, but, again, this need would not appear among their top five concerns.
Measurement of outcomes
More and more funding sources and the public at large are demanding objective and quantitative proof that what we do as service providers has a positive impact on the lives of the people we serve. Not enough is being done to develop standard measures among service providers or organizations. Consumers, in contrast, often feel that they should be consulted about the effectiveness of services. Many may believe that the experience and subjective satisfaction of the person served is the important measure. They often criticize our field for not having greater representation from the blind community on the governing boards of organizations serving people who are blind because in that way, they would be in a more strategic position to provide valuable input on whether the services provided by the organization are effective.
Preservation of specialized organizations
Service providers believe it is important to ensure the preservation of specialized organizations that provide services directed specifically at people who are blind or visually impaired and encourage such organizations to espouse public policies that reflect their personal philosophical positions. Specialized schools and state vocational rehabilitation agencies for blind people are often threatened with extinction or amalgamation. Although not every blind child needs to attend a school for the blind, we must preserve these schools for those who do, and we must advocate for separate state vocational rehabilitation agencies for blind persons in as many states as possible.
Often, however, the philosophical positions of service providers differ from those of blind people and consumer groups. It is unusual for service providers to reach out to other groups to understand their position and to coalesce with those who have the same philosophical points of view. Rarely do groups within a state--parents, consumers, professionals, organizations--get together to express unified points of view, although they may have them. Many consumer groups complain that service providers never communicate with them unless they need consumer support. That is why regular contact between consumer groups and service provider associations is so important.
The blind person's point of view
Let us now turn to the critical issues as I would list them from my perspective as a blind consumer. As with the previous section, these observations are based on my own experiences, and I will exclude some personal issues, such as financial support and independent living.
Safe and easy travel
Getting from one place to another easily and safely, a major issue for consumers who are blind or visually impaired, is also a concern of service providers, but it did not end up on the list of service providers' top five concerns. The ability of blind people like me to address this issue is somewhat limited. It often depends on the availability of public transportation and the successful advocacy efforts of visually impaired people to improve that system. The concerns of blind people related to travel tend to be quite specific: If there is a bus, will the bus driver see me waiting for that bus? Will the driver tell me when I arrive at my stop as I requested? Will a taxi pick me up if I have a dog guide? Are there detectable warnings on the edge of the train platform? Are there audible traffic signals at a dangerous and busy intersection? Will I be able to hear a hybrid car approaching?
If public transportation is not available, relying on friends or relatives for rides becomes the best alternative for blind people. If one cannot get out of the house, social isolation may be a result, and if one can't get to appointments, health can be affected. Service providers are concerned about these issues too, but to what extent are they involved in advocacy efforts to try to change the travel environment for blind people?
Access to information and the environment
It seems that every newly designed electric appliance is more inaccessible than its previous incarnation. Technology is a fact of life needed for performing many of the tasks we engage in on a daily basis. Blind people often wonder where they can purchase accessible appliances, obtain accessible cell phones, or find accessible web sites that will enable them to pay bills online. Blind people wonder how to read prescription labels, how to operate a new entertainment system with a flat screen or a television remote, and whether or not audio description will be available for television programs. Most of these issues related to activities of daily living are not even on the radar screen of service providers.
Access to assistive technology
Service providers understand the importance of assistive technology in the lives of blind people, but access to such technology would not appear among their top five concerns. Many blind people wonder if there is an adequate assistive technology training program available in their communities. They may question whether the technology trainers are good teachers who know enough about the various technology alternatives. It often seems that there are either good teachers or good techies, but that such positive characteristics are rarely embodied in the same person. They wonder whether assistive technology, whose cost can often range in the thousands of dollars, will be affordable for them. Too often the answer to one or more of these questions is "No."
Employment in accordance with one's interests and qualifications
Despite the adequacy and availability of vocational rehabilitation services, and the concern of rehabilitation counselors regarding the employment of people who are blind, employment rates remain low, especially among older visually impaired people of working age. There are many reasons for the lack of employment--including inadequate access to transportation and lack of self-confidence, especially among older persons who are experiencing the recent onset of vision loss. Employers' attitudes also remain a major obstacle.
Service providers share this concern. But, to what extent are we educating employers about the myths and realities of hiring blind and visually impaired people? To what extent do we talk to our neighbors and friends about the capabilities of blind and visually impaired people? Some organizations serving people who are visually impaired have formal programs to educate employers, but many do not. Disincentives to work are still built into the Social Security and Supplemental Security Income programs for people with disabilities, and professionals are not addressing this reality and advocating for incentives to work for visually impaired people and incentives to hire for potential employers.
Society's reaction to blindness
Many visually impaired people assert that the biggest problem relating to blindness is not blindness itself, nor the limitations imposed by blindness, but society's reaction to blind people and blindness. Changing the attitudes of the public at large is very difficult to do, but we can try to accomplish it one person at a time. Talking to friends, relatives, and neighbors can influence changes in attitudes and practices. Organizations that serve blind people offer too few structured programs to educate targeted groups about the capabilities and needs of blind and visually impaired people. Making media appearances, talking to the "movers and shakers" of the community, enlisting their involvement and support in your own work or your organization's work are key to raising awareness and increasing understanding that blind people are people first. The majority of service providers do not engage in these activities.
Crossing the divide
According to my personal, unscientific point of view, the major issues facing the field of visual impairment and blindness, as viewed by service providers and by blind people, do not intersect. The implications of this are profound. Should you as a service provider care? Absolutely! What can you do? First of all, communicate, communicate, communicate. Stephen Covey, author of The Seven Habits of Highly Effective People, said it best when he said, "Seek first to understand, then to be understood." Don't wait until there is a crisis. Ask consumers on a regular basis what their concerns are, share yours with them, and determine ways in which you can work together on issues. Prioritize together, strategize together, but most important, mobilize your collective resources toward achieving objectives and effecting change. Include consumers in your organization's work. Invite them to speak at conferences for service providers. Build trust and bridges. If you agree on issues that need to be fought for, do it together. There is nothing more powerful than service providers and consumers joining together for a common goal. Start now to build those relationships, so that the next time you want to advocate for an issue, you will know whom to approach, and you just might find a willing and articulate partner.
Carl R. Augusto, M.A., president and chief executive officer, American Foundation for the Blind, 11 Penn Plaza, Suite 300, New York, NY 10001; phone: 212-502-7600; e-mail: <email@example.com> web site: <www.afb.org>.
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