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AFB JOURNAL OVISUAL
IMPAIRMENT& BLINDNESS
  
Expanding possibilities for people with vision loss  
 

November 2008 • Volume 102 Number 11

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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 Impairment & Blindness, Volume 84, pp. 11-15.

Julie Bernas-Pierce

Print edition page number(s) 731-733

The series editor of "This Mattered to Me" is Stuart H. Wittenstein, Ed.D., superintendent of the California School for the Blind.


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 Impairment & 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, <www.aph.org>, 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. The authors state: "Because CVI is a hidden handicap, the children are frequently described as visually inattentive or poorly motivated." These characteristics of CVI continue to be explored in pediatric neurology and ophthalmology literature as an answer to the classification question is sought (see, for example, Hoyt, 2007).

The authors go on to say: "Since only those with more severe CVI were referred [to the study], they may not be representative of the general population of children with CVI." Families of children who have CVI and who participate in academic educational programs would agree that this large group of children is currently underrepresented in CVI studies and literature.

The "team approach" and practical strategies

One of the many interesting points raised in the article is the demonstrated critical benefit of a "team approach" to treating children with CVI that includes collaboration by family members and qualified medical and education professionals, the model practiced by Dr. Jan and his team at Children's Hospital in Vancouver. Despite the fact that the majority of professionals who serve children with vision impairments recognize the value of teamwork, limited resources and huge caseloads often subvert the implementation of such a model by team members. Although medical and education professionals often use a team approach for intake, assessment, and planning, team models can vary significantly by design and implementation.

Another valuable aspect of this article are the diverse intervention strategies that provided concrete techniques for working with young children with CVI. These strategies, which have been used by the home counselors at Blind Babies Foundation, include offering constant and predictable visual information, ensuring the children are positioned properly while engaged in visual tasks, and minimizing distractions during vision-based activities.

"Observations on the Habilitation of Children with Cortical Visual Impairment" is a seminal article for the field of visual impairment. It warrants multiple readings because it serves as an introduction to the literature on CVI. I believe this article represents the best of a blend of medical and developmental perspectives. In addition, this article mattered a great deal to me and to the staff members of Blind Babies Foundation. It positively influenced families' understanding of their childrens' visual development, and it gave professionals tools to better serve young children with CVI that are still being used today.

Reference

Hoyt, C. S. (2007). Brain injury and the eye. Eye, 21, 1285-1289.



Julie Bernas-Pierce, M.Ed., executive director, Blind Babies Foundation, 1814 Franklin Street, 11th Floor, Oakland, CA 94612; e-mail: <juliebp@blindbabies.org>.


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