Article

CVI Awareness: Every person with CVI has a right to life-changing access

CVI is the leading cause of childhood blindness. Learn about CVI and what access looks like.

Boy smiling wearing sunglasses holding his hands behind his head

Families and individuals with CVI have to advocate for CVI and demand life-changing access every moment of every day. CVI is the leading cause of childhood blindness. CVI is not new, it’s misunderstood and misdiagnosed. We live with CVI, and it affects all aspects of life. We know how meaningful and accessible learning is essential for building success and independence for individuals with CVI. We know that no person with CVI is unteachable.

A call to action

Cortical/cerebral visual impairment (CVI) is the leading cause of blindness in children, and we know that with accurate and early diagnosis and full access to education, many kids with CVI can improve their functional vision and gain the skills they need to thrive in the way that’s best for them. 

Infants, children, and adults with CVI, a brain-based visual impairment, are facing a health care and educational crisis. Significant numbers of children with CVI are being misdiagnosed and mislabeled, and are perceived as untestable, untreatable, and unteachable. Our children deserve better. We need systems to change now.

Every person with CVI has the right to an early diagnosis, effective vision services, and access to appropriate educational programs. No matter their zip code, no matter how their CVI manifests, every individual has the right to access opportunities and services that will empower them to reach their full potential.

As our understanding of CVI evolves, the magnitude of the challenge before us continues to grow. Investing in research and support for CVI will transform hundreds of thousands of lives now and lay the foundation for cutting-edge research, treatment, and services for future generations.

Stepping up to meet the challenge posed by CVI requires bold action, and the potential for impact is too great to pass by. We need to take steps now to ensure that all individuals with CVI have the support they need to live their best lives. 

We are in a big moment for the CVI community. We are on a precipice of change. Perkins is tackling the challenge of CVI and is committed to supporting the whole child, and their families, through bold actions in local and national advocacy, assessment, collaboration, and learning. We are committed to collaborating with, and learning from, our peers who are also out there stepping up to the challenge of CVI. We want to bring people together to build something bold and exciting.

Every child with CVI can reach their fullest potential, and every family should have the hope and support they deserve. 

Learn about CVI

What is CVI?

Learn more about CVI.

Girl sitting a a table, leaning forward, to paint the top of a large white piece of paper in front of her.

What are the common causes of CVI?

Read more about how CVI is diagnosed.

With CVI, every individual’s lived experience is different

CVI causes individuals to display unique visual behaviors commonly seen when there is damage to the brain’s visual system. Even with some common visual behaviors, CVI manifests differently across a heterogeneous population of individuals with CVI. 

With CVI, the visual system is less efficient and doesn’t have that instantaneous capture of information that those with an efficient, fully intact visual system have. Individuals with CVI have to work harder, so much harder when attempting visual tasks. And most materials, activities, and environments have to be adapted for access. 

Individuals with CVI have unique visual behaviors, which include relative strengths such as attention to color, light, and movement to support vision use. But, in addition to visual attention and recognition, they also struggle to recognize faces, interpret facial expressions, integrate multiple sensory inputs, coordinate visual motor skills, perceive fast movement, and access a full visual field. As a result, they miss out on the visual curiosity and incidental learning taken for granted by so many of us. But there is hope, thanks to neuroplasticity and individualized instruction and adaptations, there is some expectation that functional vision may improve for some individuals with CVI, along with sensory efficiency skills.

Learn more about the CVI visual behaviors and what CVI might look like.

Presume competence. Low expectations can only lead to poor outcomes. Learn about CVI so you can give my child access to all aspects of life including his education.

Barbara, CVI parent
A teenager holds a sparker in his backyard at night time.

What does access look like for individuals with CVI?

Boy sitting in front of his iPad looking words in a big red font.

 “If the child with CVI is less engaged, there’s a reason for it. It’s on us, the educators and providers, to optimize every opportunity for accessible learning to move that child as close to their learning goal as possible. We cannot predict what a child with CVI can or cannot do, but we can thoughtfully design instruction that is accessible and meaningful, so they have every opportunity to show us their skills and abilities.” —Marguerite Tibaudo, Accessible and Meaningful Learning for Students with CVI

Learn from individuals with CVI

Individuals with CVI are on the blindness spectrum

Many develop incredible compensatory skills and workarounds to exist in a society that is not accessible. CVI families and individuals with CVI often hear from others “oh but they don’t look blind.” Blindness is a wide-ranging spectrum. Blindness doesn’t “look” a certain way. Assumptions and outdated knowledge about what blindness “looks like” should not dictate who requires services. No matter the diagnosis that causes blindness, and no matter how blindness manifests, it is a human right to access life-changing healthcare, education, and services. All individuals with CVI have a right to live full and productive lives.

SHARE THIS ARTICLE
A teenaged girl wearing sunglasses is smiling big on sunny day
Article

NEI sets CVI as a research priority

Abstract images of three kids, each one larger than the next. CVI Now logo at bottom.
Article

The importance of neuroplasticity

White text on a black background: The visual system and the CVI brain, a five-part series. With images of the brain and eye.
Article

The visual system and the CVI brain