CVI Now: A Perkins School for the Blind Resource 

What is CVI? 

Cerebral/Cortical Visual Impairment, or CVI, is the leading cause of childhood blindness and low vision. CVI is a lifelong, brain-based visual impairment that a recent study shows affects up to 1 in 30 kids. Caused by complications from premature birth, lack of oxygen, pediatric stroke, infections that reach the brain, head injury, and genetic conditions, CVI is also common in neurodevelopmental conditions. Several studies show that 60-70% of kids with cerebral palsy have CVI, and one study shows that 38% of participants with Down syndrome have suspected CVI. We consider this a public health crisis. 

How CVI works 

Rather than an ocular (eye) condition like cataracts, glaucoma, or injury to the eye/optic nerve, CVI is a neurological issue caused by damage to the brain’s visual pathways or visual processing areas. In fact, some individuals with CVI have completely healthy eyes, but their brain has trouble processing what the eyes are seeing. It’s also possible to have both CVI and ocular conditions (including strabismus, atypical optic nerves, nystagmus, reduced visual acuity, visual field deficits, reduced contrast sensitivity, and others).  

People with CVI struggle with visual attention and recognition, resulting in a lack of access to and understanding of the world around them. Every person with CVI’s lived experience is different. There’s no one way a person with CVI sees the world. Some see the world as distorted, unrecognizable, or an incomprehensible color, light, and overwhelming movement. Others can focus at times but may still struggle to understand what they see. Too much visual stimulation may cause some individuals to avoid looking at objects and people around them. Some may stare at light and appear to have very low vision. Others might appear to have learning difficulties or become anxious in new environments. A busy environment, a hot day, or tiredness can make vision use nearly impossible for people with CVI. Many experience “CVI meltdowns” due to fatigue brought on by too many competing sensory inputs. No matter how CVI manifests, it’s a big deal for the individual. 

Many visual behaviors are commonly seen when there is damage or interruption to the brain’s visual system. Even as the leading cause of childhood blindness/low vision, it can be hard to find medical professionals who can diagnose CVI, which is one reason why CVI is commonly misdiagnosed or goes undiagnosed. CVI is misunderstood, and because the current system has not caught up to fully serving our kids, there aren’t enough teachers who have the training to help or medical professionals who can recognize it.  

Dive into mini-lessons and articles about each of the CVI visual behaviors on the CVINow.org site. 

What does CVI access look like? 

Creating access for individuals with CVI includes many things, starting with a comprehensive whole-child CVI assessment. The assessment findings are integrated to develop an individualized and systematic instructional approach. This informs successful program planning, intervention, environmental changes, and service delivery. An accessible educational program includes a multisensory approach to learning for the child, as well as centering autonomy, agency, and advocacy for every individual with CVI.  

Common essentials for learners with CVI include: 

• Awareness of visual fatigue and consistent break/non-visual time 
• Quiet, clutter-free, and familiar environments 
• The incorporation of different sensory channels into the learning process — auditory, tactile, visual, and/or kinesthetic (movement) — to support brain development 

• Scenarios that are deliberate, consistent, and predictable 
• Direct instruction to support concept development that their sighted peers learned through incidental learning — the information many receive through watching and looking around without even knowing it 

Children with CVI are on the blindness spectrum and have a right to the services, supports, and accommodations required for access to their education and community. We believe that every child with CVI can learn and has a right to life-changing access. We know that when we reach children early, we can help them access their world. 

CVINow.org at the CVI Center 
CVI Now’s mission is to provide CVI resources rooted in current research and the lived experiences of people with CVI and their families. CVI Now fosters community and shared connection, and it empowers families with CVI knowledge, guidance, and tools you and your child need to succeed. 

At the CVI Center at Perkins, we’re here in a shared mission: to help kids with CVI thrive and learn. We’re urgently confronting the CVI crisis — bringing together medical professionals, educators, and families to ensure every kid with CVI has the resources and support to learn and thrive. 

We understand that teaching kids with CVI is about more than visual improvement. It is about using all the senses and all the strengths each child brings to learning about their world.  

Quick links to CVI Now resources: 

Understand the CVI Visual Behaviors: CVI is lifelong. Your child might display some or all of these traits. Knowing these CVI behaviors — and how to respond — can go a long way toward supporting your child. Find videos, articles, examples of accommodations, and current research. 

CVI Now Early Intervention Series: CVI Now offers fact-packed, accessible information about EI, IFSPs, how to equip your home, strategies for daily routines, transitioning to school, emotional insights, and so much more. 

CVI Now IEP Guide: You’ll find a comprehensive and solutions-oriented resource that covers parts of the IEP, steps of the process, and what to expect, and includes CVI-specific information and advice every step of the way.  
 
CVI and Communication: Many learners with CVI have complex communication needs. Use our resource page as a guide to learn about communication tools and adaptive approaches that can work for children with CVI, AAC systems, and how other CVI parents and children navigate communication. 

CVI Stories: The CVI community has a lot to say. The collective voice of people with CVI and their families continues to grow. Our stories are powerful. Our stories create awareness. Our stories change how the world sees CVI.