Understanding CVI: What it is & and why it's an enormous crisis

The leading cause of blindness in children isn’t in the eyes, but in the brain. And Cortical / Cerebral Visual Impairment (CVI) affects 150,000+ kids in the U.S., a number that continues to grow.

But CVI is misunderstood — and there aren’t enough teachers or medical professionals who have the training to help, or to diagnose it. This means kids with CVI can’t get the education, medical attention and early intervention they need.

This has created a crisis. A whole generation of children are at high risk of growing up without the support they need. At Perkins, we know we can help kids with CVI see more, if we can reach them early.

The time for action is now. As we’ve always done in the face of crisis, we’re taking a leadership role in addressing this problem head on. But truly, we cannot end this crisis alone. That’s why we’re inviting medical professionals, educators, policy makers, families and supporters to join us on a mission to reach 50,000 children in the next five years.

Here, you’ll discover what you need to know about the leading cause of blindness, how we’re responding and the ways your support can create a better future for all children.

What is CVI?

CVI is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain.

Often, people associate blindness with ocular — or eye — impairment. This makes CVI very hard for some to understand because it’s a neurological issue, where their brains have trouble processing what their eyes are seeing.

Kids with CVI also experience different severity levels and manifestations of vision loss.

Some see the world as a swirling kaleidoscope of color and light.
Some can focus, but may still struggle to understand what they see.
Too much visual stimulation may cause others to avoid looking at objects and people around them.
Some may stare at light and appear very visually impaired.
Others might appear to have learning difficulties or become anxious in new environments.
Many experience “CVI meltdowns” due to fatigue brought on by too many competing sensory inputs.

With CVI, every individual person’s lived experience is different.

Why is CVI such an emergency?

CVI is not new — but it is widely misunderstood by both the education and medical community, and therefore, it’s largely undiagnosed or misdiagnosed.

The best way to understand the crisis surrounding CVI is to understand a certain not-at-all uncommon family journey.

It starts when a parent notices their child has vision problems, which may or may not be coupled with things like developmental delays, feeding issues or behavioral outbursts.
The parent then takes the child to a doctor for help, and may even receive a diagnosis and develop a plan of action to support the child.
As the family puts the plan in action, things still don’t feel quite right as the child does not make the kinds of improvements that would be expected, mystifying parents, doctors and educators.
The work to understand the child’s impairments continue. At the same time, the child ages into pre-school, kindergarten and elementary school, with his or her needs still not understood by parents, medical providers or teachers.
With the child’s condition still shrouded in mystery, he or she reaches an age where they’ve missed years worth of early learning, intervention and support, which sets the family and child up for additional challenges in the future.

Now take this journey of an individual family and multiply it by 150,000 in the U.S. alone.

That is the reality of the CVI crisis today. The reason, ultimately, is that our collective understanding of CVI is not where it needs to be. To gain the knowledge we need, we must convene families, educators, medical providers and researchers alike to pool our insights and build on them.

At Perkins, we’re urgently confronting CVI

We are not standing by. We are urgently confronting the world’s leading cause of childhood blindness through in-depth education, meaningful collaboration, transformative innovation, driven by the confident expectation for change.

We are on a five-year mission to reach 50,000 kids with CVI.

This is why we’ve created CVINow.org, the website and Facebook community for families of children with CVI. This is why we’ve developed a certificate program at the University of Massachusetts in Boston, for teachers of the visually impaired to assess and provide services to children with CVI. This is why we’ve created and continue to develop a new CVI curriculum from Perkins eLearning.

And there’s more. Our 5-year strategic plan centers on 5 key elements: assessment, learning, teacher training, family advocacy, medical and higher education partnerships.

Family advocacy:

With CVI Now, we’ve created a deep, trusted resource and safe space where families can get answers and build connections. And we won’t stop -— we’re adding new resources to help families advocate for their kids everyday, including IEP resources.
In addition to family advocacy and support, we are actively working on a CVI Call to Action project to elevate CVI to the national stage.

Assessment and learning:

Perkins is developing a new online comprehensive assessment (the Perkins Assessment) which takes a whole-child and inclusive approach to CVI.
This assessment system is based on current research and will have an embedded educational platform, so at every step all professionals, even those without knowledge of CVI, are able to access and use this assessment tool to best inform the most appropriate and effective educational programming for children with CVI.
The Perkins Assessment is an addition to the already existing suite of assessments. A robust set of assessment tools, including the Perkins Assessment and the CVI Range, will allow us all to best support children and families with CVI.
We’re also a learning lab for action research around interventions and educational approaches.
CVI Now also serves as a place to share ideas about how educators and providers can truly teach our kids and unlock the power of the brain to improve functional vision. No child with CVI is unteachable.

CVI teacher training:

We offer best-in-class educational and professional development opportunities in CVI, which is open to all.
We see CVI education as a journey, one in which we are all learning. As science evolves, so does our understanding of how best to support all children with CVI.
This fall, Perkins eLearning has six courses about CVI, including three new ones: CVI Foundations Course, CVI and AAC, and CVI and the Ever-Changing Brain.

Medical and higher education research and partnerships:

We are a place where cutting edge research and leading voices in the field come together to find new ways to support all of our children.
We collaborate with stakeholders in the research, medical and education fields to inform our work with the most up-to-date science and expertise.
We have working partnerships with hospitals and research centers. 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.

How you can help kids and families with CVI

You can play a vital role in changing the future for millions of children with CVI. The best way to ensure more children receive the support they need is to get involved with our work.

Another way is to just continue familiarizing yourself with CVI, so you can become a spoken advocate for kids and help us raise awareness. Here are a few more resources to get you started:

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Understanding CVI: What it is & and why it’s an enormous crisis

CVI is the leading cause of blindness in children. Hundreds of thousands who have it aren’t getting the help they need.

What is CVI?

Why is CVI such an emergency?