This Mattered to Me

Observations on the Habilitation of Children with Cortical Visual Impairment, by Maryke Groenveld, James E. Jan, and Patricia Leader, published in the January 1990 issue of the Journal of Visual & Blindness, Volume 84, pp. 11-15. I was first introduced to the article entitled Observations on the Habilitation of Children with Cortical Visual Impairment as a subscriber to the Journal of Visual & Blindness (JVIB). The content was timely because so many infants with cortical visual impairment (CVI) were being referred to the Blind Babies Foundation and other programs serving children with visual impairments around the United States. This article is important to me because it addresses issues about the nature of the CVI diagnosis and the need for better demographic data on children with CVI, and the authors' findings offer effective intervention strategies. Through his research with children who have CVI, James E. Jan (one of the article's authors) and his team at Children's Hospital in Vancouver, British Columbia, Canada, brought attention to a population whose complex visual and neurological needs are still at issue 18 years after the article was first published. Because of the complex nature and increasing identification of CVI, the content of this article continues to be critically important to personnel preparation, service delivery, and consumer product development in the field of visual impairment today. When Dr. Jan presented the research contained in part in this article at the Blind Babies Foundation in the mid-1990s, he expressed concern about the impact of the needs of children with CVI on personnel and financial resources in western Canada. Today, teachers of students who are visually impaired and other concerned professionals still grapple with their capacity to serve an increasing population of children who have CVI, many of whom have multiple impairments. The article pointed out how little incidence data on CVI was available at the time: There are no accurate trend studies on the prevalence of [CVI] in childhood, but CVI is more common than was formerly believed. With this comment, Dr. Jan and his coauthors planted a seed that, supported by other influences, eventually grew into Babies Count, a U.S. registry of early childhood visual impairment. (Readers may contact American Printing House for the Blind, , to participate in this project.) TERMINOLOGY AND DEFINING A POPULATION In 1990, the authors also put into motion an effort to eliminate use of the term cortical blindness, since children in the study and elsewhere demonstrated gradual increased visual function, which made CVI a more accurate term, especially for parents who were confused by the blindness label when they observed their children using residual vision in daily routines. The term CVI and its definition continue to be a focus of debate in the United States and Europe. Present-day discussions center on the differentiation of the terms cortical versus cerebral and which word is most appropriate for the C in CVI, the use of which can vary by individual, discipline, or geographic region. The article went on to frame the debate over whether CVI ought to include only persons with visual acuity loss or to expand the classification to embrace those with solely visual attention and visual perception problems. …

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