It is time to catch up with children who have CVI

SeeingCVISeptember is CVI Awareness month. CVI is a brain based visual impairment, that means it’s a problem with the brain, not the eyes. CVI is about visual interpretation and visual recognition, it is not about acuity (Mazel). People with CVI see what we see, but they cannot interpret it (Roman). CVI is the leading cause of visual impairment in children. And it has been since the 1990s.

It is time to catch up with children who have CVI. Too often, children with CVI are being served by providers, including teachers of students with visual impairments (TVI) who do not know about CVI, or who do not know enough about CVI. Educators need to be prepared to support the student who has been newly diagnosed with CVI. And they need to be well versed enough to support the academic student who has CVI. That means having a deep understanding to support all students with CVI. It means not struggling to catch up when the student with CVI comes into your classroom.

There has been a lot of momentum in the world of CVI awareness, advocacy and education. Three things are cause for hope.

IMG_9223Within the field of blindness and visual impairment, one institution stands out. At this year’s CVI Symposium, Perkins School for the Blind demonstrated its commitment to supporting children with CVI and moving the field of CVI forward. The Symposium convened educators, physicians, researchers and parents around the topics of Medical and Research, Assessment and Promising Practices, Family Education and Advocacy, and Higher Education. Seeing Perkins take on this leadership role is heartening, especially for parents of children with CVI. Other long standing institutions in this field need to follow Perkins’ lead. If you were unable to attend the Symposium in Boston, you can access transcripts and recordings at 2019 CVI Symposium. For families who struggle to get a diagnosis of CVI, to find knowledgeable providers and educators to work with their child, and to obtain an appropriate education, progress cannot come soon enough.

Second, the face of visual impairment has changed (Merabet). In the May 2019 issue of Seminars in Pediatric Neurology, a team of physicians published an article calling for a change in the definition of blindness: “CVI has become the leading cause of significant vision loss in children in developed countries, but continues to be an under-recognized cause of visual disability with respect to services aimed at maximizing visual development. Current criteria which are used to define visual disability rely on measures of visual acuity and visual field. Many children who require specialized vision services do not qualify, because these standard definitions of vision impairment do not account for CVI. In order to appropriately identify patients with CVI and offer the resources which may positively impact functional use of vision, the definition of visual impairment and blindness needs to be modified. This commentary calls for a change in the definition of visual impairment and blindness to acknowledge those persons with brain-based vision impairment.” The entire issue of the publication is dedicated to CVI and includes articles on vision teacher preparedness in CVI, a CVI parent survey, CVI and autism, vision function vs functional vision, and topics on assessment, among other things. The definition of blindness needs to change so that students with CVI can receive an earlier diagnosis, they can qualify for early intervention and school based services, and they can qualify for the support they will require once they age out of the educational system and are adults living with CVI.

Finally, the University of Massachusetts Boston and Perkins recently announced the cooperative creation of a Cortical/Cerebral Visual Impairment (CVI) series of professional development courses for vision professionals. “The five class, CVI specific content curriculum will cover the essential components for vision professionals to more deeply understand the visual brain, the brain based causes and manifestations of CVI, the current CVI specific assessment methods, how to apply assessments for students with CVI, how to apply current promising practices for the different manifestations of CVI, and how to effectively collaborate around CVI with medical professionals, researchers, parents and school team members.” The courses will form the first ever certificate program in Cortical/Cerebral Visual Impairment (CVI).  University of Massachusetts Boston remains the only graduate vision program in the US with dedicated, required coursework on CVI. This is exactly the kind of progress that is needed. The curriculum represents the depth of understanding that teachers need in order to support students with CVI. This should be the future of CVI education.

This September, all of this progress can give us hope in moving the understanding of CVI forward. It is time for the world to catch up with our children with CVI.


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