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How to use new CVI data to advocate for your child with CVI
No more doubts — Use this undeniable CVI data to advocate for your child with CVI.
You know your child better than anyone. You’ve visited providers, advocated for classroom support, and championed your family every step of the way as you navigated CVI. But for so many of us, something was missing: undeniable data proving that CVI is an epidemic that simply cannot be ignored. You were always climbing uphill, either struggling for a diagnosis or hoping that schools would take you seriously.
No more. The CVI Center at Perkins School for the Blind harnessed medical claims data and advanced analytics from McKinsey & Company to uncover first-of-its-kind CVI prevalence data focused on children and young adults with CVI in the United States. The results are stunning, shareable, and designed to create change.
Some highlights:
- CVI is common: There are over 180,000 kids with CVI in the United States.
- CVI is extremely underdiagnosed: Less than 20% of kids with CVI are being diagnosed. This new data found 24,269 children with CVI and 155,980 additional children with likely CVI.
- Access to care is lacking: The average CVI patient lives at least 186 miles from a provider, with some families living more than 400 miles away.
- CVI is unrecognized in schools: Just 17 states explicitly include CVI in their eligibility criteria for supportive services.
- There’s probably a child with CVI in every classroom. At least 3% of children in mainstream school — equating to one child in every classroom — have CVI-related visual difficulties.
The data is on our side. Our kids won’t be ignored any longer.
How you can take control
Now, the good news: You can find this data at Perkins and use it for advocacy. You can share this information to:
- Empower yourself at doctors’ appointments
- Share with your educational team
- Explain CVI to your family and friends
- Advocate for large-scale change among stakeholder groups such as medical providers, school districts, health insurance companies, policymakers, and more
We always knew that CVI was the leading cause of childhood blindness and low vision – but alarmingly underdiagnosed and misunderstood. Now we can prove it.
How to use the data
We designed this information for easy printing, sharing, and browsing. You’ll find intuitive, interactive state-by-state, county-by-county maps tracking:
- CVI’s prevalence and distance between providers
- Access to resources, such as health insurance
- Social risk factors, such as poverty and access to transportation
You’ll also find an in-depth, 14-page whitepaper from Perkins and McKinsey, diving deep on CVI’s prevalence and specific ideas for policy, educational, and social change, underpinned by explicit methodology.
We need better diagnosis and greater access to support, especially in high-need areas. Now we can get there.
What’s next?
CVI is no longer a hidden epidemic. We’ve made it easy to share this information, with actionable ways to make change. To start, here are some talking points.
- In the classroom: Diagnoses such as autism are now better understood and accommodated. The same can be true for CVI. Here’s why.
- With medical providers: CVI is not a low-incidence, rare diagnosis. In fact, it is incredibly common and often co-occurs with other conditions such as cerebral palsy (65%) and epilepsy (64%).
- Among family and friends: Children with this condition need to be believed. Mental health, self-esteem, and social growth are undermined when kids aren’t heard.
- In your community: Marginalized people are more likely to go undiagnosed. Spread the word. We have the facts. We have the data. The time is now!
Conversation starters: Common questions or statements about CVI
I’ve never even heard of CVI. What is it?
CVI (Cerebral/Cortical Visual Impairment) is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain. It’s currently the leading cause of blindness and low vision in children.
Often, people think of blindness and low vision with ocular (eye) impairment. CVI is a neurological issue. The brain has trouble processing what the eyes can see. Happily, the National Eye Institute and the National Institutes of Health have identified CVI as a research priority. You can learn more about CVI here.
I doubt your child has CVI. It’s not common.
Actually, there are more than 180,000 kids with CVI in the United States alone. On one big UK shows that there may be 1 in 30 children with a CVI-related visual difficulty.
The problem is that less than 20% of children with CVI have been diagnosed with it. In fact, the diagnosis rate is less than 14%. Meanwhile, patients with CVI have frequent healthcare encounters, an average of 14 specialty visits and 7 primary care visits per year. Sixty-one percent of patients with CVI have at least one neurology visit, and 51% have at least 1 visit with a pediatric neurology specialist.
We can’t fully implement accommodations or direct service for your child’s CVI in their school day.
Why not? One in 30 children have CVI-related vision problems. In fact, Perkins offers a comprehensive CVI IEP guide. It’s very straightforward. Kids with CVI can and should learn alongside their peers.
We don’t typically have programming for kids with CVI in our schools. It’s low-incidence, so we can’t invest in this kind of training.
Again, there are more than 180,000 kids with CVI in the United States alone. It’s the leading cause of childhood blindness. For perspective: 1 in 36 children have autism. 1 in 30 have CVI-related vision problems. The issue is not incidence.
The key problem is that there’s a lack of a universally accepted diagnostic criteria and approach for CVI, which delays diagnosis and leads to frustration as families face difficulty finding support.
And, because most states employ the federal definition of blindness to determine eligibility for early intervention or special education programs, some children with CVI and visual acuity and/or visual field function near normal range may not qualify for these programs in their state. Only 17 states specifically include CVI in their eligibility criteria for supportive services.
Perkins offers a wealth of research for educators to support the many children in their classrooms with CVI-related vision problems. Here’s a great start.
CVI just seems to be the new shiny thing everyone wants to talk about.
Great! They should. The more we talk about CVI, the more awareness will spread.
With greater awareness, accurate diagnosis, and improved access to quality care and educational services, we can begin to improve outcomes. Learn more about diagnosing CVI here and testing for CVI here.
Are you sure it’s CVI? The behaviors and struggles you’re observing could be from the impact of their cerebral palsy or epilepsy.
CVI commonly co-occurs with other conditions. For example, 65% of school children with CVI also have a cerebral palsy diagnosis, 64% have epilepsy, 72% have developmental delays, and 20% have genetic anomalies.
