The rationale behind The CVI Range Endorsement-why did this become necessary?

I have long wanted to provide my perspectives on the Perkins Roman CVI Range Endorsement.  There seems to be confusion and even resistance about the Endorsement and I hope to clear up some of the misinformation or misgivings.

Around 1994 I was the lead person in a project at The Western Pennsylvania School for Blind Children called Project CRIB (Community Resources for Infants who are Blind).  The purpose was to offer functional vision evaluations to young children who were newly diagnosed with visual impairment. The project was a joy and I so appreciated the opportunity to offer information to families who were searching for the “next steps” after diagnosis.  I did not anticipate the reality I now see clearly, but could not see then.

In my time at WPSBC and Project CRIB, I was encountering many more children with CVI than those with glaucoma, ROP, cataracts, or other forms of ocular visual impairment. I was not fully prepared to address the needs of children with CVI but was highly motivated and had been since my early teaching days that began 20 years prior.  I was also teaching at The University of Pittsburgh at that time and had many resources that facilitated opportunities for me to study CVI in greater depth. But, it was ultimately at WPSBC that I first conjured the concept of The CVI Range.

I began to notice patterns of response when I asked parents questions about their child’s use of vision.  For example, when I asked, “What does your child look at?”, many parents reported, “Nothing….well, she does look at Big Bird”.  Or, “Is your child more alert to new things or familiar ones?” Of course, the responses were generally, “the familiar”. I paired these parent reports with information I was reading about the unique traits of children with CVI (Jan et al) and a distinct profile began to emerge.  I found myself reporting to parents that I thought about the degree of effect of CVI as being a 1-10 continuum and would report the number value of an individual child’s responses.  Then one day, there was a threshold moment when a parent asked me, “What does it mean for a child to score 4?”.  It meant of course that I would need to operationalize my 1-10 range. Thus began the years-long process of determining the elements that defined the characteristics at each level of functional vision based on observation of the child, interview of the parent, and my direct assessment techniques.  What began as a simple checklist of behaviors and characteristics I noticed became an intricate and interwoven set of data that I called The CVI Range.

In 2007, The CVI Range was included in my book, Cortical Visual Impairment: An Approach to Identification, Assessment & Intervention. In 2010, Dr. Sandra Newcomb published the results of her study on the reliability and validity of The CVI Range.  What once was a tool I used for my own professional purposes became a more widely embraced method to evaluate the functional vision of individuals with CVI.  I was both flattered and nervous as a cat in a rainstorm.  I was becoming more and more aware that vision professionals and others were using The CVI Range in ways that were not appropriate.  I learned of professionals using a single part of the test to derive a score, of miss-scoring and guesses.  I became aware of students who were being diagnosed with CVI based on The CVI Range and others who were being dismissed because they scored 10 (a score I have never assigned), both of which are improper uses of The CVI Range.  The CVI Range is my creation & my responsibility.  Time to take action. I owed it to the students.  I owed it to their parents.  I owed it to the field of visual impairment.

I began to think about a way to create a standard for the protocol. This would become a way to both acknowledge the extraordinary efforts of those who took the time to learn to conduct The CVI Range with fidelity and to validate their skill set.  This, of course, does not indicate that those who choose NOT to become CVI Range Endorsed are uniformly unskilled.  But, it does provide a bank of individuals who have demonstrated their ability to administer The CVI Range properly.  It’s that simple.

So, I gathered about 25 letters of support from ophthalmologists, administrators, educators, parents, state directors, and consumers about the need for a CVI Range Endorsement.  I first approached AER with my detailed proposal and the letters of support.  A committee was formed to review the need for the CVI Range Endorsement and after a single conference call, the response was that a CVI Range Endorsement process was unnecessary.  If you know me at all, you can anticipate that I did not stop there.  I next approached Dave Power, the CEO of Perkins School for the Blind.  He agreed to review the material and quickly decided that The CVI Range Endorsement process was important and should be part of the work of Perkins. I am beyond grateful to Dave for his ability to see to the heart of my proposal and to be forward thinking.  Thanks too to Betsy McGinnity and Mary Zatta for breathing life into the development and maintenance of the CVI Endorsement process.  You are pillars.

The CVI Range Endorsement provides an opportunity for professionals to be distinguished for their knowledge of The CVI Range.  It is a mere beginning in the work that must be accomplished on behalf of individuals with CVI.  The CVI Range Endorsement is also an act of advocacy.  Those who seek Endorsement are stepping over the line of “we didn’t learn this in my program”, to a place of personal responsibility and professional excellence on behalf of their students.  I am so very very proud of each person who has made the decision to voluntarily go further than required.  I am honored to be called a teacher and to be in your ranks.  Thank you.