Sociology

Sociology Question 1: Do continuing beliefs about the potential for visual independence of children with low vision influence the referral rates for clinical low vision evaluations?

Commentary: There continue to be both under- and over rated beliefs regarding visual and other capabilities of people who have low vision, and especially those who are deemed to be legally blind. These beliefs may limit children’s opportunities to become visually efficient and independent. When I founded the project, Providing Access to the Visual Environment (PAVE) at Vanderbilt University, I developed a form, “Expectations for Visual Functioning” (EVF).¹² We asked parents, students approximately 12 years of age and older, and teachers of students with visual impairments who taught each student to complete the form prior to their receiving a clinical low vision evaluation. The EVF includes 20 tasks and uses a Likert-type scale, Each individual was to independently consider the likelihood that the child would, with or without low vision devices and follow-up instruction, be able to accomplish each task. Tasks included near, intermediate, and distance activities, as well as those that would place the child in motion, require different amounts of sustained visual reading, and so forth. While we were not seeking a score as “passing” or realistic, we looked at different levels of expectations of those who knew the same child as well as how the child viewed his own potential for visual functioning. We were seeking to learn whether the child was receiving similar or mixed messages from his or her parents and teachers and whether his or her own expectations were similar or quite different from the adults.

From triads of many parents, children, and educators, the results of the EVF indicated a wide disparity among those interested in an individual child. Teachers who had worked with children with low vision would tend to rate their expectations for visual independence higher than those of parents. Too many children were receiving mixed messages about others’ expectations for their potential to become or not to become visually independent.

At Vanderbilt Medical Center the EVF was also completed by ophthalmologists and ophthalmology residents during one department meeting. For this task, I used a scenario of a young man with oculocutaneous albinism and gave his clinical measures along with pertinent personal facts, e.g., average intelligence, level of education.

Among ophthalmologists who were looking at the same description and clinical measures of a fictitious individual, there was a wide distribution of scores. The disparity among ophthalmologists suggested that they had little or no idea of what their patients could accomplish visually; knowing the individual’s clinical measures with and without optical devices, was not helpful in determining their expectations. (Results of these exercises were not published.)

While the above paragraphs discuss information about children or a fictitious young adult who had been referred for low vision services, and ophthalmologists who were in a department that was integrally involved in pediatric low vision care, the question I posed (sociology question 1) relates more to those children who do not ever receive a referral.

I wish to offer one more experience that speaks to this question. I visited the home of an 11 month old child with albinism; my reason for going was to take pictures for an upcoming presentation. I noticed the child’s mother always placed objects in the child’s hands. As part of her report to the early childhood educator, she said they had been to the ophthalmologist and was told that the baby’s vision is probably between 20/60 and 20/200. The mother then said, “I only hope that when she grows up she’ll be able to see more than shadows”. By placing objects in the child’s hands, this parent had already set the stage for an emphasis on learning within “hand’s reach”.

Might it be because of the beliefs of current – or potential improvements in functioning or lack of information about the services that reduce the likelihood that children will be referred for comprehensive low vision services? Is the term, “legal blindness” still giving adults images of minimal amounts of vision, even when a child has 20/200 visual acuity? Or, is the label “visually impaired” sufficient for adults to expect a child will not be able to handle tasks involving detail vision? 

Sociology Question 2: How do current relationships among professionals in different disciplines influence the extent to which children with low vision receive low vision services?

Commentary: Although in the early 1970’s there were efforts and publications to create and promote multidisciplinary teams to serve people with low vision,^13-15 discussions began regarding possible professional barriers to the development of such teams. For example, some believed that ophthalmologists would not refer patients to optometrists due to professional turf issues and a lack of respect for optometry. As a special educator working with children with low vision I recall asking to join a clinical low vision group developed to bring ophthalmologists and optometrists into low vision teams; I was invited to attend but not to participate or become a member because I was not a clinician… and educators, at that time, were not readily seen as contributors to how a child uses vision. (This followed my dissertation on how educators could provide instruction in the use of prescribed optical devices in the classroom. My topic came from a realization after seeing too many prescribed devices sitting on shelves -- because children couldn’t transfer skills from an office to classrooms or outdoor environments and there was little instruction occurring in doctors’ offices in the 1970’s.)

Further, educators believed that ophthalmology, optometry and clinical low vision services were within the medical profession and in classrooms they worked with children whose medical needs were already being met. Thus, if a child did not come to school with an optical device, his or her “doctor” did not deem a device to be potentially beneficial. Educators may have also believed that if they were to suggest a clinical low vision evaluation, they would be stepping out of their role as teacher; medical evaluations should be left to the decisions and privacy of the family and their doctors. While these practices have changed somewhat, I was amazed, as I directed Project PAVE into the 21st century, that we saw children 10, 12 or even 18 years of age who had never had a clinical low vision evaluation and who, most assuredly could have benefitted years before had an ophthalmologist, optometrist, or special educator made such a referral. 

Sociology Question 3: Does the education/rehabilitation legacy of working with “blind people” influence how the needs of children with low vision are addressed?

Commentary:  From my experience, many individuals seek personnel preparation programs for education because they wish to work with children who are “blind”. Rarely did I interview undergraduate or master’s level candidates and encounter someone with experience and interest in working with children with low vision. Typically, I heard such comments as, “I read to a blind student in college” or “I am fascinated with how blind people read braille” (with the word “blind” referring to someone who is functionally or totally blind).

The field of education for students with low vision and blindness comes from a legacy of blindness education which began long before programs or methodologies were developed for children with low vision. (And, the early programs in schools for children with low vision were based on “sight conservation” and “sight saving” practices.) These prospective students’ experiences and observations of seeing people using dog guides and white canes or viewing movies about totally blind people) lead to an initial commitment to the blind population. Many were surprised to learn of the percentages of children with low vision who are served by educators and many became very interested in the field of low vision once they had course work and experiences with these children.

Eye care professionals see their primary function as sight preservers. Relatively few ophthalmologists have gained a low vision specialty and while a majority of clinical low vision specialists tend to be from the discipline of optometry, most general optometrists also seem to see their role as the preservation of vision -- rather than increasing the use of “functional’ vision. Improvement is typically seen through clinical measurements and those measurements indicate the doctor’s success, as well as the reduction or cure for a pathology. How many eye care professionals begin with a desire to work with people with low vision? Their lack of referrals may also be the result of not wanting to refer to a clinical low vision specialist (ophthalmologist or optometrist) because of a lack of information or they may be concerned that they might lose a patient.

Another aspect of this concept is that individuals hear about services “for the blind”. Too few organizations have changed their names to show a representation of the populations they serve. For example, major organizations such as the American Printing House for the Blind, The Hadley School for the Blind, and the American Foundation for the Blind (which has added a subtitle about people with visual impairments), may feel the historical significance of their names and/or worry about reductions in donations or other financial support if their names were changed. The same holds true for special schools. While some have altered their names, such as the Texas School for the Blind and Visually Impaired, others maintain names such as the (State name) School for the Blind and the member organization of these schools is the Council of Schools for the Blind (COSB). An argument that they serve individuals who are “legally blind” is another concern as most professionals acknowledge the problems that come with the term, legal blindness, first defined in 1934.

And, from this legacy, professionals may believe that their job is to ease the educational experience for children, to “teach blind skills” or to provide large print so the children do not seem to “struggle” with their reading at near. In other words, they may view working with a child with low vision to increase reading speed or to improve stamina  or to access information at a distance as being insensitive to their true needs... because these children are “more blind than sighted".