What is the underlying reason that most TVIs have less time for children with CVI compared to those with ocular visual impairment?
Educators who specialize in visual impairment (teachers of the visually impaired, orientation & mobility specialists) have a long tradition of providing services to infants, school-age students, and transition-age individuals who have visual impairment. They are a proud group and were among the first special educators to serve students with visual impairment in their local school settings. Universities have taken responsibility to train educational specialists in the methods and materials needed to provide equal opportunity to learning. Teachers of the visually impaired are asked to appropriately serve the needs of children who are birth-21 (and beyond, in some states) who have all levels of ability and challenge. They must be equally skilled at teaching braille as they are at teaching the use of complex technology. Teachers of the visually impaired and O&M specialists are able to read and interpret medical eye reports and describe the functional vision implications of hundreds of eye disorders. They write educational goals and objectives in IEPs to ensure the steady progress of their students. Vision providers advocate attending Lion’s Club meetings seeking special funds so their students can attend summer camps or ECC intensive courses. They design their caseloads in order to prioritize service to those students who have the most intensive needs. They do it all.
Unless the student has CVI. And, perhaps it is not their fault.
Educational vision providers come in two groups relative to CVI. The first group believes that, as they were taught, visual impairment is caused by damage to the eye or optic nerve. They use fairly strict criteria for who qualifies for service based on the eye report and their assessment of functional vision which is also designed to probe the impact of vision loss due to ocular causes. Direct and/or consult services are determined based on IEP goals and objectives.
The second group is exactly like the first group but with some additions. This group encountered students whose functional vision did not align with their eye report. They persisted in trying to understand what they were noticing in the student. They interviewed parents in order to get their all-important points of view. They observed the student in their learning and/or living settings and finally, they presented materials to the students in one-to-one situations in order to see the impact of specialized adaptations and environments. They inherently know that this brain-based form of visual impairment requires a major shift in thinking about visual impairment. And, oh, they learned almost all-or all-of this content outside of their university training program. This group of vision providers are the new wave of professionals who are responding to the most common cause of visual impairment in children and are doing it from a place of passion and duty.
I am fully aware of the efforts in place to update university teacher training programs. I thank parents of children with CVI for that change. But what happens now is also critically important. In my estimation, there are thousands of children who are attending “school” but not. They are considered too brain-injured to be visually tuned in to their classroom or to the materials offered. They are sometimes labeled autistic or profoundly impaired, or attention disordered. Just this week, as is the case all weeks, I encountered a child who is the child of highly educated and motivated parents. She was identified as having autism spectrum disorder but is not making expected progress in school. She loves the attention of adults and is quite skilled at soliciting them to interact with her. She is verbal and understands language though her experiences result in conversations that center on her familiar world. She also has a classic profile of a child with CVI. She experienced an acquired neurological trauma, has an eye exam that is normal and demonstrated 10/10 of the characteristics associated with CVI. She is in elementary school and her CVI has never been addressed educationally. The closest Perkins-Roman CVI Range Endorsed person is over 200 miles from their home. She cannot wait until the university CVI programs are up and running. This child with CVI and her thousands of under-served peers are disenfranchised from the basic right to be educated. Without visual access, they are doomed.
But, we should not despair. Despair accomplishes nothing. We must continue to ask more of our universities, more of our school districts, more of our schools for the blind, more of our professional organizations, and more of ourselves. We must embrace the sense of disequilibrium that comes with pending change and then, be a part of the change. And parents, I ask that you never settle for less than your child deserves. Push us, demand more from us, teach us about your child, and replace us with a new provider if we are not capable. Oh, and also let us know if we are doing good.