Guest Editors' Page
Print edition page number(s) 579-582
Issues related to vision and the brain have been moving to the forefront of medical, educational, and rehabilitation services for children and adults with vision impairment over the past 10 years. In our commentary, covering some 60 years, we address the relatively recent increase in the numbers of children and adults with vision conditions related to brain injury, which parallel developments occurring when our professional field began, and when large numbers of wounded veterans returned blinded from combat during World War II. Then as now, professionals who work with children and adults with new, emerging causes of vision loss needed exposure to curricula containing relevant information. Today the challenge is to provide information and skills relevant to the interplay between the brain and vision to meet the needs of a burgeoning population. A number of faculty have provided perspectives in this issue of the Journal of Visual Impairment & Blindness (JVIB) on the extent to which this material has been included in their programs, and they have highlighted the challenges associated with them.
Terminology is also a significant issue that must be considered by the medical, rehabilitation, and special education communities. Terminology affects the identification of conditions and those who experience them, qualification for services, and data collection methods. It can also affect the ways in which education and rehabilitation treatment options and programs are developed, as well as the content of personnel preparation programs and the types of personnel preparation programs that must address issues related to vision and the brain. The commentary by Colenbrander in this issue of the journal addresses terminology. For the remainder of this editorial, we will use the terms CVI/ABI (cerebral visual impairment/acquired brain injury) to refer to visual impairment and visual dysfunction due to brain injury (including traumatic brain injury, TBI) in children and adults.
This special issue of JVIB contains articles that address many of the challenges confronting today's practitioner. Lueck's commentary examines changes in our understanding of the nature of CVI in children. The slow emergence of multidisciplinary services that address CVI/ABI has made it difficult for many to find appropriate, comprehensive assistance. The impact of CVI/ABI on families and access to appropriate services comes to the foreground in the article by Jackel and colleagues. Assessment provides the basis for these services, and the article by Newcomb discusses one assessment tool developed to evaluate the traditional hallmarks of cortical visual impairment in children. Changes over time seen in children with cortical visual impairment using this instrument are discussed in the Research Report by Roman Lantzy and Lantzy. Intervention is another major concern for adults and children with CVI/ABI. Lam and his colleagues present a case study that includes intervention recommendations for a child with near-normal visual acuity but whose brain injury still leads to visual processing difficulties that severely affect functional vision.
Relevant to adults, Kingston and colleagues present a case study from assessment to intervention that reflects a model program under development at the U.S. Department of Veterans Affairs (VA) medical center in Palo Alto, California. This presentation emphasizes the importance of multidisciplinary teams and the impact of multifaceted forms of assessment and interventions on maximizing outcomes.
Now that we have mentioned the range of topics that are included in this special issue, topics that cover a great deal of ground, we would like to discuss areas that have not been covered. We do this to emphasize the broad scope of material that must be addressed as our field develops an evidenced-based body of knowledge that leads to adequate and appropriate services for children and adults with CVI/ABI.
More basic research is needed to understand the highly complex neural bases for the functional effects of CVI/ABI. With this increased understanding, researchers, medical personnel, educational personnel, and rehabilitation personnel will be better able to predict functional outcomes from different types of structural damage. Recovery possibilities for children and adults, for example, will be better understood, as will the effects of interventions on recovery processes. In addition, more accurate and comprehensive methods of assessment, as well as more effective methods of intervention, can be developed through a firmer foundation of knowledge in the workings of brain mechanisms.
Currently, there are no compelling data to describe the extent of visual loss or dysfunction associated with CVI in children or ABI in adults. More comprehensive and systematic collection of demographic data is an area that must be addressed. Data is particularly scant for adults and children with brain injury and functional vision issues that are unrelated to visual acuity or visual fields. This is particularly problematic in that visual acuity and visual field form traditional bases for the definition of visual impairment and determine the allocation of resources to meet needs. Acquisition of this information for all children and adults with CVI/ABI (including those who meet and those who do not meet the definition of visual impairment) will lead to a better understanding of the breadth of individuals affected by CVI/ABI. As a consequence, the development of more accessible and comprehensive services can be established from sound demographic data collected by agencies, rehabilitation and special education personnel, and researchers.
Methods of assessment and intervention need to be empirically tied to theoretical models that directly relate functional effects to neural systems. These models require validation, as do any assessment and intervention protocols based upon them.
CVI/ABI affect the individual as a whole. As a result, our assessment methods need to be theoretically sound while addressing the wide array of outcomes associated with brain injury and its effects on functional vision and other performance skills.
As with assessment, validated interventions that have a firm theoretical base must be developed that address the wide array of outcomes associated with vision and brain injury. They need to include not only environmental adaptations and sensory substitutions for lost or weak skills and abilities, but also specific interventions that can lead to improved use of visual abilities per se as they are used in conjunction with other performance domains.
Much of the work on adults and children with CVI/ABI has been based on studies of individual cases, partly because there is so much variation on a case-by-case basis that it is difficult to pool data for this wide-ranging population. Efforts must be made to design systems that record, monitor, and research trends and outcomes over time in a large number of individuals with CVI/ABI. These efforts must include meaningful, replicable data points that can be pooled for analysis. Information derived from such systems can be used by researchers, medical personnel, and education or rehabilitation personnel to better serve their patients, students, and clients.
The VA has been at the vanguard in work with adults with TBI. More research, outreach, and rehabilitation need to be directed toward adults within and outside the VA medical system, and information obtained through this work needs to be synthesized and disseminated beyond the VA system.
Individuals and their families can be profoundly affected by CVI/ABI. The condition often includes or is accompanied by additional disabilities, and the effects of CVI/ABI can range from quite profound, to very subtle. Whether subtle or profound, these conditions, if unaddressed, can confound even the best vision rehabilitation strategies. Efforts must be made to educate individuals and families about the range of possible effects of CVI/ABI--and the role of various professionals in the medical, educational, and rehabilitation process--and they must also be provided information about how to determine and locate appropriate multidisciplinary services--services that are only now beginning to emerge. In addition, counseling methods need to be developed that address specific effects of the condition on individuals and families.
Families and caregivers need to be provided the opportunity to participate in the treatment of the individual so that they know the effects of interventions and can see progress over time. Families and caregivers can be valuable co-therapists and can continue therapy beyond rehabilitation or education settings. Their inclusion would provide an additional, needed resource in the face of great need and limited services.
To those of us who have been following CVI/ABI over a period of time, the complexities of the condition are being increasingly revealed. As we gather new knowledge, it is becoming increasingly clear that a multidisciplinary approach to management and care is essential. It is not a simple task to understand and provide remediation for a person with CVI/ABI. This task needs to be undertaken by professionals from more than one discipline in order to take advantage of skills that address a variety of concerns. The identification of ways to encourage coordination of professionals and services needs to be addressed in order to provide optimal care for persons with CVI/ABI. This includes the development of multidisciplinary teams that may not originate solely from one institution or agency.
As the complexities of CVI/ABI are revealed, this information must quickly and accurately reach practitioners in the medical, education, and rehabilitation communities. This involves inclusion of cutting-edge material in personnel preparation programs as well as in-service education for veteran practitioners. It is difficult to keep up with new developments as they rapidly materialize. Systems (including professional publications, workshops, in-service trainings, conferences, and distance education classes) must be developed to provide mechanisms that disseminate information in a timely and cost-effective manner.
How CVI in children interfaces with other conditions that have a neural basis--such as autism spectrum disorders or eye conditions that may have a brain-based component such as retinopathy of prematurity, optic nerve hypoplasia, and genetic conditions with brain-based visual consequences--must be examined.
How TBI/ABI in adults interfaces with other conditions parallels that of CVI in children. Hearing loss; paralysis; muscle weakness; cognitive, emotional, or speech deficits; and other conditions must be considered in vision rehabilitation programs. The presence of these co-existing conditions further emphasizes the need for interdisciplinary treatment strategies.
This special issue of JVIB can only hint at what needs to be known about CVI/ABI in children and adults. Although we applaud the hard work of JVIB and all the authors of this special issue, we also call for concerted efforts by practitioners and researchers to continue to address the critical areas highlighted in this issue, as more work needs to be done. Furthermore, we encourage increased efforts that target those unaddressed issues mentioned in this editorial. We must all work collectively toward expanding the knowledge base, conveying new findings accurately to the field, and applying such discoveries to practice in a timely fashion for the improvement of services and outcomes for children and adults with CVI/ABI and their families.
Amanda Hall Lueck, Ph.D., professor and coordinator, Program in Visual Impairments, Department of Special Education, San Francisco State University, 1600 Holloway Avenue, San Francisco CA 94132; e-mail: <email@example.com>. Gregory L. Goodrich, Ph.D., supervisory research psychologist and coordinator, Optometric Research Fellowship Program, Department of Veterans Affairs Palo Alto Health Care System, 3801 Miranda Avenue, Palo Alto, CA 94304; e-mail: <firstname.lastname@example.org>.
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