Parents and family members of children with cerebral visual impairment, a brain-based visual processing disorder, are far from alone. According to the Boston Children’s Hospital, cerebral/ cortical visual impairment (CVI) is the most common cause of permanent vision loss in children.
Despite its prevalence, it isn’t widely understood.
Advocating for Your Child
Because CVI research is relatively new and still emerging, your child’s medical and educational team may not be well-informed of the functional and educational manifestations and implications. You, parents, can keep abreast of research and recommendations, and advocate for your child.
As an advocate, if you suspect your child has CVI due to the signs you’ve witnessed, you can arm yourself with a resource such as Medical Professionals: How Doctors Diagnose CVI and seek the evaluation of a neural ophthalmologist.
If your child has been diagnosed with CVI, you can arm yourself with a resource such as Cerebral Visual Impairment: A Brain-Based Visual Condition and request a multi-disciplinary assessment which may include assessments in functional vision, learning media, orientation and mobility, psychology or neuropsychology, speech and language, physical therapy, and occupational therapy.
Armed with the advice in CVI Assessment/ Strategies, you can suggest a team assessment where the teacher for students with visual impairments (TVI) facilitates the assessment while additional assessors (such as the psychologist and speech teacher) observe and ask questions. Team assessments promote a more cohesive understanding of the child and their needs; they also decrease the number of times you have to answer the same questions!
You can utilize resources such as Environmental Accommodations, Communication, Literacy, Reading after Acquired Brain Injury, and APH Products for CVI and advocate for appropriate services and accommodations.
Yes, to best advocate for your child, you’ll want to remain informed.
Resources on CVI
Below you will find several current resources on CVI and its diverse functional and educational implications:
- CVI, by the American Printing House for the Blind
- CVI NOW, by the Perkins School for the Blind
- Little Bear Sees, a foundation which provides families with information, products, and tools for their children with CVI
- CVI Scotland, “designed to be owned by everyone affected by CVI”
- Start Seeing CVI, a parent generated website for increasing awareness of CVI
Publications on CVI
- Cortical Visual Impairment: An Approach to Assessment and Intervention (2nd edition), by Dr. Christine Roman-Lantzy
- Cortical Visual Impairment Advanced Principles by Dr. Christine Roman-Lantzy
- Cerebral/cortical visual impairment (CVI): the responsibility of practitioners in the field of visual impairment in a changing landscape. – Free Online Library (thefreelibrary.com) by Ely, Mindy, S. , Journal of Visual Impairment and Blindness
- Cerebral Visual Impairment: A Brain-Based Visual Condition, presented by Dr. Amanda Lueck for the Perkins School for the Blind
- CVI From a Parent’s Perspective, presented by Rebecca Davis for the Perkins School for the Blind
- Medical Professionals: How Doctors Diagnose CVI, by the Pediatric Cortical Visual Impairment Society
For a thorough list of resources, please visit Resources | CVI (aphtech.org).
APH FamilyConnect desires to support you as you advocate for your child with CVI.