CVI critical mass and advocacy

CVI critical mass and advocacy
CVI critical mass and advocacy

My son is visually impaired. Learning to say those words was hard. These days I am more likely to say, My son has a cortical visual impairment (CVI). CVI is a brain based visual impairment that interferes with the ability to make sense of what you are looking at. Visually impaired is an inadequate description of my son’s vision. In seven years I have learned that most of the time, when we say blind or visually impaired, we are not talking about my son who has CVI, or about children who have CVI. When we say visually impaired, we are talking about someone with an ocular impairment, which has to do with the structure of the eye. Most everything that goes along with serving a student with an ocular impairment – accommodations, Braille, early learning, education, the Expanded Core Curriculum (ECC), orientation and mobility (O&M), schools for the blind, teachers of the visually impaired (TVI), university vision teacher preparation programs – has almost nothing to do with a child who has CVI.

Every time we talk to somebody new about cortical visual impairment – not visual impairment – we raise awareness of CVI. And the response is always the same, I’ve never heard of CVI.

My own advocacy work revolves around Start Seeing CVI and the questions, What do children with CVI need? What do CVI parents need? It has included suggesting blog post topics to a CVI teacher. Making webinar suggestions, such as CVI and O&M. Always areas that all of us are struggling with. It included cowriting a blog post on what to include in an IEP for students who have CVI. By far my most popular post, the feedback was, We are desperate for information like this. This was from a teacher. We are desperate. It has included contacting AFB Press to ask, when will the two new CVI books by Christine Roman-Lantzy be published? We needed those books yesterday. And lately I have become something of a CVI troll, commenting on social media posts from the blindness community that should include our kids with CVI, but most of the time does not.

CVI is the leading cause of visual impairment in our kids. As a parent, the lack of awareness, and education, and knowledge of cortical visual impairment is one of the hardest lessons.

Perkins School for the Blind stands out from the historical blindness community for its effort to take on CVI. They offer CVI continuing education, distance learning, trainings, webinars, an annual CVI Summit. When university teacher preparation programs are not teaching nearly enough about CVI, Perkins took on the CVI Endorsement, so that parents could have some reassurance that a provider, usually a TVI, is as competent in cortical visual impairment as he says he is. But the CVI Endorsement only goes so far, because it is not a state requirement for TVIs (vision teacher credentials vary from state to state).

CVI parents, your efforts are needed and no effort is too small.

  • Comment on social media posts by providers who should be serving our kids with CVI. Why aren’t you talking about CVI? What are you doing for students who have CVI? Email them. Send them your ideas.
  • Write a letter to the editor of your local paper or email your state representative  describing the difficulty of getting a CVI diagnosis, or obtaining appropriate special education services for your child who has CVI.
  • Is there a university vision teacher preparation program in your area? Call and tell them, CVI is the leading cause of visual impairment in our kids, why aren’t you teaching CVI? Training in CVI should not be optional.
  • The national association for vision professionals is the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI). Contact them and tell them they need to do a whole lot more for students who have CVI.

CVI Parents are reaching critical mass. Recent parent efforts resulted in an upcoming meeting with APH to talk about how to better serve students who have cortical visual impairment. A nation wide CVI advocacy movement is in the works (more on that soon). CVI parents are the busiest parents I know, I have heard Christine Roman say this often. IEP meetings, medical appointments, therapy appointments, seizures, EEGs, MRIs, hospital stays, not to mention teaching our kids how to read, and creating all our own original CVI materials out of thin air.

CVI parents are the busiest parents I know… because there is not nearly enough awareness of CVI.

For additional information on CVI advocacy efforts, parents or providers please email Let’s make 2018 the year that we Start Seeing CVI.

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