Numbers Count

As the mom of four kids with special needs, I have had my share of IEP meetings. With each meeting I am given a copy of a document that can contain upwards of 40 pages. The information in that document will drive my kids’ programming for the next year. Most of that information is related to progress, narratives of present levels, goals to begin working on, and specially designed instruction. Imbedded in that information is a plethora of numbers: numbers for percentages to show progress; numbers that have been recorded for baseline skills; numbers to indicate scores on standardized tests. Some of these numbers, like IQ scores, are static, and will remain with my child throughout his or her education. Others, such as reading levels, number of Braille words read per minute, numbers of buttons used accurately on an AAC device, will change, as my child changes and progresses. In the 12 years since we adopted out first child and I became the mother of a child with special needs, and subsequently added three more to our family, no one ever shied away from the numbers that are so important in the evaluation and planning for my children’s Individual Education Programs.

So it was with great surprise that I was informed recently by a vision supervisor in my state (Pennsylvania) that the ‘powers-that-be’ in our state are ‘recommending’ that the CVI Range (Roman, 2007) score not be recorded in a child’s IEP. I was sure I had heard the person wrong, or that they had misunderstood the directive, and when I had the opportunity, I asked two of those ‘powers-that-be’, in person, whether or not the information was true. After initially denying that they said that, and suggesting that perhaps the supervisors had misinterpreted their directive, one of them admitted to me that yes, that was indeed what they had said.

Interesting.

When I questioned her further about the reasoning for suggesting that the CVI Range score, which is the foundation for the IEP present levels, goals, and specially designed instruction for a child with CVI, she told me that they just don’t want that ‘number’ following the student throughout their educational career.

Clearly, this educational professional, who is responsible for developing training and implementing policies across my state, has no idea what the CVI Range score is, what the purpose for it is, or what it means. As anyone who has even the beginning knowledge of the CVI Range knows, the operative word is “Range”. The score is not static, and it is EXPECTED to change, under the guiding principle of ‘Expectation of Change’ (Roman, 2007). IF the score remains the same, they are doing it wrong, and that in and of itself is another problem.

Or, alternatively, perhaps she does understand what the CVI Range score means.

I pressed her for their rationale behind this new ‘suggestion’ and she told me that they just don’t want the score to be included in the IEP, but the teachers could write the information from the CVI Range in theire present level narratives. Huh. So, perhaps the psychologist who evaluates my son who is Intellectually Disabled should write a lovely narrative about his present levels and never report a score that places him in the ID category which then drives his programming? Or maybe for my son who is Gifted, they should chat about his skills, his language and vocabulary, and never place him into the programming that meets his unique needs? I wonder how that would work out? Conversely, if we think of the logic being used here (and I make assumptions that ‘logic’ was ever considered) if the teachers never reported the reading levels of my daughter who is deaf, in fear that those numbers would stay with her for all of her educational career, but recorded in a narrative that she was ‘doing great’ ‘making progress’ ‘really using her reading skills’, how would I know she was making progress at all?

No educator with any integrity would accept this, and no parent should.

So, here’s the interesting truth, from my perspective. While the ‘powers’ are setting up their supportive narrative of the needs of children with Cortical Visual Impairment, there are mechanisms going on behind the scenes to undermine the CVI Range and its importance for children with CVI. As the only educational approach for children with Cortical Visual Impairment, the CVI Range has been researched as reliable.(https://eric.ed.gov/?id=EJ902175) Dr. Christine Roman-Lantzy’s book Cortical Visual Impairment, an Approach to Education and Assessment has sold more copies than any other book by its publisher, AFB Press. Currently she has two other books Cortical Visual Impairment, An Approach to Education and Assessment, 2nd Edition, and Cortical Visual Impairment, Advanced Principles. Each of these books became instant bestsellers on Amazon within hours of publication.

Each year, hundreds upon hundreds of families travel to see Dr. Roman at her clinic at Pediatric View, in Pittsburgh, PA. These families are looking for guidance, information, and support for their children with CVI. When they leave her clinic after a thorough and extensive evaluation, guess what they come out with? A full report, full evaluation and a CVI Range SCORE. Imagine that? And when they return, often annually, guess what they get? A thorough evaluation, and a CVI Range SCORE. That score would have hopefully changed as the parents shared the report with the child’s team, and goals were adjusted, specially designed intrauction was put into place to match the Range score.

It’s funny how that works. A simple number between 0 and 10 can have that much power, give that much information, and literally drive the success of the child who has a brain-based visual impairment.

So what’s the problem with reporting the number score , which is an integral and essential element of the only Educational assessment designed for children with CVI? What has changed? What are they afraid of?

My thought is that now that parents are becoming knowledgeable about CVI they know that their child’s CVI Range score means something. They learn from other parents what supports are available, and they are no longer satisfied with accepting what is being offered to them. They are talking to each other and realizing that because the CVI Range score means something, they should expect that their children’s IEP should reflect the score and the information in the CVI Range. Perhaps, just perhaps, this is unsettling to the powers-that-be.

Since the CVI Range (Roman, 2007) was published in 2007, no other educational approach has been presented. Of course, there has been information and research, but nothing comprehensive that reflects an evaluation based on the 10 behavioral characteristics of CVI (Roman, 2007), a comprehensive mechanism for writing present levels, IEP goals, specially designed instruction, and principles that guide real progress for improving functional vision. While the vision field would welcome more information and additional assessment resources, none have come along that match the CVI Range (Roman, 2007). So, what’s the issue? Why would professionals outwardly undermine the educational approach that has been accepted in our field for over a decade?

I recently attended a conference in my state where the presenter spent the entire day talking about CVI, and never referenced Dr. Roman-Lantzy, either in her presentation, nor in her works cited. That was interesting. How can you present to a group of parents and professionals on a topic and never discuss the only educational approach on that subject, and the first, and to this day only, evaluation tool that targets the characteristics which are a part of the diagnostic criteria? And yet, throughout the presentation, which ended up being a commercial for an upcoming publication and left the audience with no useful information or interventions (which was one of the goals of the presentation), the information this person presented on clearly mirrored the work of Dr. Roman, (with key words changed, yet lacking substance) . When I questioned this presenter, because of course I had to, she was quite defensive of my suggestion that Dr. Roman’s work should be referenced, or at least included in any way. Most disappointing of all, when a question from the audience was asked ‘Can we expect improvement of a child’s vision?’ this presenter hesitated for a moment and then answered cheerily “Well, we just don’t know!”

Guess what? We actually DO know. A child’s functional vision DOES improve when intentional interventions are implemented based on the child’s CVI Range score, when the CVI Range is completed with fidelity by a professional knowledgeable and who has the depth and breadth of training in the CVI Range approach. And that score, that little number that the professionals in my state are so afraid of, and want to do away with? That number is important. As a TVI and a CVI consultant, that number speaks volumes to me when I read it. It tells me the child’s CVI Phase (Roman, 2007) (not to be confused with CVI Level), it tells me where that child is, precisely, on the CVI Range, and allows me to program for where he will be the next time the CVI Range is completed. That number counts, and that number will never be eliminated from any IEP written by myself or for anyone I advise.

So, my advice for parents, in my state as well as any others, as these behind-the-scenes attacks on the CVI Range and Dr. Roman’s approach continue: stay strong. Know that one reason they do not want your child’s score recorded in the IEP is that they know that score represents something, and it holds them accountable for progress. They are afraid you will talk to another family in your area whose child has a similar score and will demand more appropriate goals and service time. They also know that the new publication they are trying so hard to push has no scores, no progress built in, no principle of Expectation of Change (Roman, 2007). This new publication may well be helpful, perhaps it will give us some new information and new ideas. Terrific . However, given what I have seen, and the outright undermining of the CVI Range, I am suspicious of the intent behind all of this.

For the child with Cortical Visual Impairment, the CVI Range score COUNTS. Ask the parent whose child was scored a ‘1.75’ on the CVI Range when he was 9 months old, and who has now scored a ‘9’on the Range, at the age of 8. Ask the mother whose daughter was scored a ‘3’ on the Range and then progressed to a ‘5’. And ask them how much hard work and planning went in to helping their children improve measurable functional vision. Ask them how important those numbers are, how what those numbers represent for them. They would answer that those number represent hard work, accountability, progress, and hope.

Those numbers matter.

Those numbers count.