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

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?

CVI stands for Cortical/Cerebral Visual Impairment. CVI is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain.
Individuals with CVI are neurodiverse, and their perspective on the world is unique and valuable. An individualized multisensory approach to learning and intervention empowers life-changing access.
CVI is the leading cause of blindness in children.

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?

Common causes of CVI in babies and young children include lack of oxygen or blood supply to the brain (often because of a stroke), infections that reach the brain, head injury, and certain genetic conditions.
Conditions associated with a prevalence of CVI include premature birth, developmental delays, Cerebral Palsy, hydrocephalus, Williams syndrome, Autism spectrum disorder, Down Syndrome, CDKL5 Deficiency Disorder, Rett syndrome, many other genetic conditions and gene variants.

With CVI, every individual’s lived experience is different

Some see the world as a swirling mass of color, light and movement that is incomprehensible and overwhelming.
Some can focus at times, but may still struggle to understand what they see.
Many may shut out the world altogether and avoid looking at objects and people, even with their own parents, because it’s so difficult to make sense of their surroundings.
Others might appear to have learning difficulties or become anxious in new environments.
Some use a white cane to navigate safely in their environment and communities.
Many experience “CVI meltdowns” due to fatigue brought on by too many competing sensory inputs.

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?

Autonomy and choice. Children and adults with CVI have different severity levels of visual impairment. There’s no one-size-fits-all model, and each person is unique. Autonomy and choice must always be the underlying principle when working with students with CVI and all people with disabilities.
Assessment. Children with CVI require integrated comprehensive assessments to examine the visual and behavioral features of CVI that uniquely impact your child. This includes CVI assessments and tools, along with a Functional Vision Assessment for co-existing ocular conditions, a Learning Media Assessment (LMA) using a CVI-lens to determines learning media needs, and an Orientation and Mobility (O&M) Assessment to determine instruction in safe navigation skills. Collectively, these assessments provide information that’s needed for successful program planning, intervention, environmental changes, and service delivery. The goal is to integrate these findings into the whole picture of the child’s educational needs.
An accessible school day. For many individuals with CVI, using vision is hard work, often resulting in visual fatigue, exhaustion, and stress. Visual fatigue is a common shared experiences among individuals with CVI. An instructional approach with adapted materials, tasks, and environments that meet the unique needs of the child will help reduce fatigue and increase access to learning. Learn more about Matt Tietjen’s “What’s the Complexity?” Framework.
A multisensory approach. It’s essential to help individuals with CVI build their dynamic toolbox for access by providing a multisensory approach, which incorporates different sensory channels into the learning process—auditory, tactile, visual, kinesthetic (movement). All sensory inputs support brain development. Our brain is highly interconnected and ever-changing. With CVI, it’s not only about the possibility of visual improvement, but it’s also about the growth of sensory efficiency skills that will support learning and independence.
Intentional and systematic instruction. Individuals with CVI require intentional learning—scenarios that are deliberate, consistent and predictable. Accessible learning includes 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. Incidental learning helps us make sense of our world. Without incidental learning, words and concepts lack meaning. Kids with CVI often miss the chance to ascribe sensory meaning to their world in the same way we do, which is why creating intentional opportunities for incidental learning is so important. Individuals with CVI also require direct instruction in the Expanded Core Curriculum (ECC), which teaches foundational skills children with disabilities need for daily life in school, at home and in the community must be strategically taught and integrated into all aspects of their education.
Visually simple, quiet environments for learning. Many individuals with CVI require quiet, clutter-free, and familiar environments for learning. Too much visual clutter, noise, and other sensory information overloads the CVI brain and the visual system, making it extremely difficult to visually access objects and environments, and acquire new learning.
Accessible and meaningful learning. No person with CVI is exempt from learning. No person with CVI is too anything to keep them from learning. All individuals with CVI can be readers, writers, and problem solvers, and require every opportunity to develop literacy and numeracy skills presented in an assessment-driven way: methodical, intentional, and accessible. Every child with CVI is ready for literacy and math instruction.

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

Why music is my vision: Dagbjört talks about living with CVI as an adult
How my world works: Self-advocacy and CVI
Tina’s Art: “How I see the world”
Nai’s CVI Perspective: “You’re seeing but you’re not” (3-part series)
Aidan shares what it’s like to live with CVI
Nicola McDowell’s Blog, an educator and researcher with acquired CVI openly and brilliantly shares her experiences
The CVI Perspective, a rich, vulnerable and truth-telling blog by an adult with CVI
Find more resources from CVI families at Voices of the CVI Community.

Individuals with CVI are on the blindness spectrum

Many people with CVI 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.