Since writing the first part of this series I have had the pleasure of speaking with Dr. Christine Roman the developer of the CVI Range Assessment. I also have done my best to perform this assessment on Maya. The CVI Range has a 0-10 scale, and describes three broad phases of visual processing development. Where the child falls on the range corresponds to the types of interventions used to help the child improve his/her visual processing skills.
Based on my evaluation and observations, Maya has CVI and it is impacting her ability to learn. In fact, currently we are approaching an area (Phase III) where she is stuck unless we have further support. Until now, I knew Maya had problems with visual processing but did not understand much about them, nor could I find anyone who could help us make sense of them. Since hearing Dr. Roman speak, reading her book, and going through the CVI Range Assessment, I have a much better understanding of her challenges and may actually be able to help her progress in these specific areas. It’s a rare moment of raising a child with a brain injury where we have a plan!
I now understand why despite repeated eye exams, vision therapy (which was focused upon eye exercises aimed at resolving ocular impairments) and prescription adjustments, Maya still has problems seeing. One particular issue that escaped me was that Maya has difficulty recognizing faces, a condition on its own referred to as prosopagnosia. This is something I found particularly disturbing because I thought Maya’s quirky sense of humor was leading her to repeatedly ask people she knew to tell her their names. After hearing Dr. Roman mention problems with facial recognition as a symptom of CVI, I started to cry, realizing that potentially something more serious was going on with her vision. This issue alone could impact Maya’s relationships with peers and adults, as well as create confusion for her throughout the day. In fact, some of her teachers had picked up on this and had started to wonder if she was purposefully ignoring them.
The possibility of being able to take action and help Maya drew me further into learning more about Dr. Roman’s work. Particularly encouraging for myself and other parents is that Dr. Roman believes parents often intuitively cater to their child’s visual needs. Looking back some of the things I have done to help Maya process visual information is on par with the strategies Dr. Roman presents to help children improve in Phases I and II (Phase III becomes trickier). In fact, Dr. Roman told me that parents have approximately 50% of the information needed to perform a CVI Range Assessment. While this offered me some relief, I am unable alone, to help Maya progress to the next step.
This is the most disturbing aspect about CVI and the current state of research. Without established evaluation processes and intervention protocols, progress for Maya and other individual’s with CVI is left up to chance and parental intuition and advocacy. These children could (and are) easily get stuck in their progress, unable to improve their ability to learn and engage with their environment and perhaps will be misdiagnosed with another condition.
Thinking about Dr. Roman’s work has led me to identify similarities between the success she has had improving children’s functional vision with what we have learned about helping Maya progress in other areas of learning. Whether emotional, cognitive, or physical learning, Maya’s greatest gains have come through helping her brain organize and relate to information in meaningful ways. It sounds like a simple and common principle, but I see it ignored or bypassed by professionals, therapists and educators every day.
To improve visual processing, the automated steps a child without CVI naturally acquires and builds upon over time, must be broken down into increasingly smaller pieces and taught to the child with CVI. This allows the brain to begin to build new connections and accept increasingly complex visual processing tasks (sounds a lot like the principles of brain plasticity Anat Baniel and her predecessor Moshe Feldenkrais stumbled upon).
Through the CVI Range Dr. Roman has created a reliable evaluation measure that offers detailed information about an individual’s visual processing rather than periodically capturing their scattered symptoms. The Range is intended to illustrate in detail how the visual processing skills of a child with CVI may vary from his/her same aged peers who have normal visual processing capabilities.
Dr. Roman firmly believes that CVI can be improved. Despite a disturbing lack of information and support for this field of study, she has research to support her claims. In the following study, published with her husband, neonatologist Dr. Lantzy, “Outcomes and Opportunities: A Study of Children with Cortical Visual Impairment”, the data suggests,
1. Functional vision in individuals with CVI can be measured.
2. Improvements in functional vision are not simply associated with a child getting older, but improved through using the CVI Range Assessment and corresponding interventions.
3. A child’s particular neurological history did not dictate their ability to move up the CVI Range/ improve their visual processing.
Unfortunately this is only the beginning of the research that is needed to expand the field of CVI and generate support for early intervention services. Despite the dire need for additional research, Dr. Roman is unaware of any other CVI assessment and matching intervention program. A lack of support from other professionals has hampered the betterment of the field. Dr. Roman was forthcoming in sharing with me some of the resistance she has been met with by her peers and some medical professionals in discussing CVI and in looking for collaborators to improve screening and outcomes.
“What’s their beef?” I asked her.
She said some professionals have complained that CVI requires too much time and effort. Others don’t believe there is anything that can be done about CVI because its origin is an unchangeable brain injury (a common theme directed toward people with cerebral palsy). There also seems to be some longstanding squabble over who should be responsible for supporting kids with CVI: vision specialists or neurology specialists. And finally, but very importantly, there is no reimbursement for treating CVI. This financial reality means that many professionals may not be motivated to pay attention to new information about diagnosing and improving CVI if they can’t be reimbursed for it.
This doesn’t mean there aren’t professionals trying to identify and treat CVI. There are several traditional diagnostic measures in use for CVI including MRIs, Teller Acuity Cards, and Visual Evoked Potential screenings. In discussing these with Dr. Roman she shared that she developed the CVI Range Assessment because she never felt these existing evaluation protocols were accurate, reliable, or provided comprehensive information about the individual’s functional vision. Moreover, according to Dr. Roman, it is imperative that in order for interventions to be meaningful and effective for individuals with CVI they must correlate with the individual’s current level of visual processing skills. Many treatment strategies are one size fits all, do not identify or adjust to each individual’s specific needs, and do not track their progress in those areas. In her trainings Dr. Roman often says, “You need more than pom poms and a light box to treat CVI.”
Dr. Roman also explained several instances to me where she believes evaluations and treatments in use for CVI are ineffectively borrowed from ocular impairment strategies. Ultimately this bothers her because the treatments or interventions for an eye condition are not the same as those for a visual processing impairment. Understanding the differences between ocular and visual processing issues and how to treat them, is imperative to supporting an individual’s visual health, quality of life, and ability to learn.
The CVI range developed by Dr. Roman has been validated by other research studies. Dr. Sandy Newcomb from the University of Maryland has studied and published the reliability and validity of the CVI Range in the Journal of Visual Impairment and Blindness. Her research outcomes validated that the CVI Range is a reliable tool for measuring the degree of CVI in an individual.
Despite the ongoing confusion and controversy about CVI, Dr. Roman remains passionate and committed to learning and sharing as much as she can about the condition. The goal of her CVI Range Assessment is to integrate a set of interventions into the child’s education program throughout the day rather than to add to the list of therapies that the family is already committed to. The information gathered through the CVI Range is designed to transfer easily to the Individualized Education Plan, where it can be implemented free of charge to the family.
It seems support for Dr. Roman’s work is spreading among therapy professionals and parents. She shared with me that four leading medical institutions (I am not at liberty to name them) are currently working to set up testing of her CVI infant screening protocol. This is exciting news to Dr. Roman, who is eager to help children with CVI be indentified as early as possible in order to help them access treatment.
As mentioned in the first part of this post, the Academy of Pediatrics articulates guidelines for vision screening and monitoring, but there is no protocol to evaluate and track the problems and progress for people who may have CVI. Dr. Roman keeps her courses open to anyone who has a sincere interest in learning about CVI because she believes “Kids with CVI can’t wait”.
Dr. Roman’s work is another confirmation for me that new learning and neurological connections for children with CP/brain injuries is possible. Perhaps with more pioneers like Dr. Roman and more research, scientists will continue to identify key pieces involved with harnessing brain plasticity. My hope is that one day we will overturn the notion that children with brain injuries have limited hope for improvement, and that early intervention and habilitation for vision, cognition, motor skills, and more, will be increasingly successful and commonplace.
How do I get help for my child?
Dr. Roman is very dedicated and focused on doing whatever she can to help support individuals with CVI. She has an extraordinary blend of humility and passion about her work. In some ways I told her she may have too much humility given the modesty of her website which excludes information about her speaking engagements and what types of training she can offer. But promoting herself and her work are not her focus. She waits for parents, educators and therapists to call upon her and tell her what they need. With that said, I asked Dr. Roman to share with me which states have put together organized trainings on the CVI Range. You will find these listed below. Dr. Roman is currently working on her second book which will clarify the information presented in the first, and focus on supporting people with CVI who are in Phase III. To find resources in your area you may wish to join the following facebook pages:
“Cortical Visual Impairment Awareness”-closed group
You also may find information from your local parent to parent organization. If you get stuck please feel welcome to contact Dr. Roman directly by phone. You will find this information on her website: http://cviresources.com/page1/page1.html
More Resources (not included in Part 1):
Dr. Roman is available upon request to provide training and educational information about CVI. http://cviresources.com/index.html
The following states have participated in professional training by Dr. Roman. Some have initiated mentoring programs for training people in the use of the CVI Range. The contact will vary depending on who provided the funding for the training program/s. If you state is not listed you still may be able to connect with someone local who has attended one of Dr. Roman’s training programs. You may wish to ask your local parent to parent organization about potential local resources.
The Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) place that maintains a state by state directory and may be able to connect you with a local professional trained in the CVI Range.
Connecticut–New England Deaf Blind Coalition
New Hampshire–New England Deaf Blind Coalition
Maryland–Maryland Deaf-Blind Project
Massachusetts–New England Deaf Blind Coalition
Michigan–Dept of Education: Low Incidence Outreach, Collette Bauman–email@example.com (517) 373-2887 or (888) 760-2206
Pennsylvania–Western PA School for Blind Children
Washington–Washington School for the Blind
West Virginia–Dept of Eduation
Dr. Roman has also conducted trainings internationally. Please contact her office for more details about opportunities for her to come to your local area to provide CVI training.