Reflections on 2018
It’s almost 2019. What a year this has been. There have been so many things to reflect upon both personal and professional. I am going to indulge myself a bit.
The year started with the usual suspects. Promises to get fit (ish), to find more quiet time to knit, or walk in the woods, or watch the birds (yes, I am a nerd). But the little spiral book that is my calendar preempted many of those plans. I’m not sorry-I love my work…every bit of it. But, I do wonder about my inability to quiet my thoughts and to follow those occasional instincts for calm. Nevermind that, it’s been an interesting and challenging year.
There have been accomplishments. The revision of Cortical Visual Impairment: An Approach to Identification, Assessment & Intervention was released early in 2018. “Book 2” is done and if the stars align and the moon is in orbit with Jupiter, I hear it may even be released. I am so fortunate to have co-authors in this text and each of them is impressive. What an honor.
I still have Pediatric VIEW at West Penn Hospital even though the hospital loses money every day that I am there. The work I get to do at Pediatric VIEW is the hardest and most rewarding.
I have travelled to specialized schools, hospitals, family homes, public schools and therapeutic settings to teach adults and to evaluate children. That is an incredible gift and to this day I find it intriguing that others are interested in my points of view on CVI.
The CVI courses provided by Perkins eLearning have been wildly successful and thus, provide training to thousands of interested participants from all over the world. I continue to watch the list of Perkins-Roman CVI Endorsed professionals grow and it fills me with hope to realize that more students are being offered an education by those who are motivated to go the extra mile.
I had an opportunity to spend a rich afternoon with families of children who have a child with CVI. It was incredible to see the interactions of the siblings and parents in a non-structured event. I smiled so hard all day that I may have met my happiness quotient for the decade.
But, of course, 2018 has also had some worrisome events. In September my best friend/sister of 45 years died suddenly and unexpectedly. She was my Old Same and closest relationship (let’s face it there are things you share with your best girlfriend that you don’t necessarily even share with a spouse). I met her in the first months of my first year as a teacher of the visually impaired. It was at her urging that I began working with children who did not qualify for my caseload. She hated it when after 17 years teaching in the public schools, I resigned to work at The University of Pittsburgh but she knew that the interest she sparked in me about CVI had to be pursued. So, the loss of my friend is huge and constant. It has left a hole in my heart that will not be repaired but one that I will be forced to live with. I think it also makes me acutely aware of the urgency of each day and never missing the opportunity to do what is most authentically right.
In 2018 I felt another loss as well, this one in the field in which I have dedicated my life’s work. The CVI Resolution 2018-001 presented at AER International dashed the shred of optimism I had about the potential for leadership in the professional organization I belonged to for most of my adult life. I struggle to reconcile how this could be the same organization that presented me with The Bledsoe Award for “outstanding literature in the field of blindness and visual impairment”. The Resolution created confusion and division among the very professionals AER is charged with supporting. And parents of children with CVI seemed even more frustrated. Their voices were strong but often met with defensiveness or excuses. Shame on us.
Not unrelated to the frustrations described above, parents of children with CVI truly found their collective voice in 2018. On-line groups, tele-support groups, and face-to-face interactions have resulted in families crossing their arms, digging their heels in & drawing a line in the sand. They are demanding equal access to their child’s education and no longer tolerate CVI being a second-class citizen to the opportunities and services provided to children (who also deserve) with ocular conditions.
I am so impressed with their advocacy and the resource they are to each other. These parents are making history. They have no choice. After all, what would you do if your child had CVI and was 1) dismissed from a caseload because “vision was the least of her problems”, or, 2) seen by a vision professional 4 times a year as a consult, or, 3) scheduled for vision support based on the hours left over after the braille students were accounted for, or, 4) provided vision services by a person who thinks the only functional vision assessment is the one designed for individuals with ocular visual impairment, or, 5) believed to need little support once they were in Phase III, or, 6) inappropriately diagnosed with a behavior problem or other condition when in fact the interfering difficulties were all intrinsic to CVI, or, 7)…..1000)? Really, ask yourself, what would you do? So, I applaud these busiest of all parents for the momentum they are creating and from which all children with CVI will benefit.
So, I sit at my laptop on a sunny winter day wondering what will come in 2019. I am hopeful but not foolish. I will continue to conjure my inner gut and make the professional choices that benefit children. Here’s what I hope:
- Parents of children with CVI will continue to strengthen their voices and that their children’s needs will be met from diagnosis through adulthood. I recognize that this “wish” may need more than the 12 months assigned to 2019.
- CVI strategies will be an occasional approach used only to support a solid, effective METHODOLOGY for teaching students who have CVI. It is my belief that a deep knowledge of CVI, child development, and learning theory are mandatory prerequisites to effective approaches for students with CVI.
- The number of Perkins-Roman CVI Range Endorsed individuals will continue to grow thus demonstrating the dedication of professionals who serve students with CVI.
- That the CVI Infant Screening protocol will be implemented in numerous settings. We have had tremendous success at West Penn Hospital where every at-risk child in our NICU is screened and followed for potential CVI. No child with CVI slips through the cracks.
- That evidence of the reliability and validity of The CVI Range will be replicated
- That the study currently being conducted by The Bridge School will support the efficacy of interventions based on The CVI Range
- That those who seem to have opposing outlooks regarding CVI will have more opportunity to collaborate and develop mutual respect based on a genuine understanding of each other’s work
- That university programs will teach CVI content in a rigorous and meaningful way to their pre-service students.
- That the Perkins eLearning Phase III course is completed and launched.
There are more, actually, many more wishes on my CVI list but I commit to the ones described above for now. The rest of them can be discussed any night between 2-5 AM when I am sorting them out.
Happy New Year and best wishes to all.
In July 2018, AER passed Resolution 2018-001. This Resolution included content that potentially limited the use of The CVI Range as an assessment of functional vision in students who have CVI. The following is my response to the Resolution. My statement provides an explanation of my point of view regarding AER’s Resolution 2018-001. The Resolution was removed from AER’s website in September, 2018.
August 24, 2018
To whom it May Concern,
I am enclosing my comments to your Resolution (AER-2018-00). Many of the statements in your document are misleading, incomplete, or inaccurate. I find the purpose of your Resolution very much in question as I have been in the field of visual impairment for 45 years and I have never seen a position such as the one proposed in Resolution 2018-001. Your document specifically targets my work in a number of inaccurate ways. I have edited your Resolution line by line, but I will attempt to describe the largest issues in this letter.
You described The CVI Range as “but one assessment” in your statements that call for TVIs to consider use of multiple other tools to assess the educational needs of young children and students with CVI. The list of additional assessments do not approximate the comprehensive nature of the information derived from the results of The CVI Range. Many of the other instruments cited in the “rationale” (added after the Resolution was passed), are primarily used to test a particular aspect of visual dysfunction rather than a comprehensive profile of functional vision. More troubling, the alternative, additional tools listed in the “rationale” are almost exclusively for individuals with visual perceptual problems or cerebral visual impairment. As Lueck & Dutton describe (2015) & Jan (2011), cortical and cerebral visual impairments are not interchangeable terms. It is inappropriate to describe the use of a test of functional vision for cortical visual impairment with those designed for individuals with cerebral visual impairment. But you do. Perhaps further explanation is necessary.
The CVI Range scores are obtained by information that is systematically gathered through observation of the student in living and learning settings, interview of a parent or caregiver, and a set of specific direct-assessment techniques. The scores are used to describe the degree of effect of the CVI characteristics. The results of The CVI Range can be applied directly to IFSP or IEP content and accommodations necessary to provide visual access throughout the natural routines of the student’s day. No other test for individuals with cortical visual impairment, or cerebral visual impairment for that matter, includes this comprehensive approach.
The CVI Range has supported the educational and functional vision needs of children since at least 2007. Cortical Visual Impairment: An Approach to Assessment & Intervention, was awarded The Bledsoe Award by AER for written material that was recognized as valuable to the field of visual impairment. Is AER now reversing their stand about the importance of the very work they acknowledged as an outstanding contribution to the profession? It is also important to recognize that parents of children with CVI advocate for the use of The CVI Range for one reason. They have found the use of The CVI Range and associated educational approaches effective. If you want to represent the best interests of families and the educators who support children with CVI, you will take the responsibility to revise the Resolution with appropriate corrections.
I cannot fully identify the motivations of the authors of Resolution 2018-001. The underlying message that parents cannot and should not require CVI Range evaluations conveys a meaning that is both confusing and a potential attempt to divert families away from an approach that has supported their children’s access to education successfully. This is especially odd in this era of demands for data driven measures. The only test of functional vision for students with CVI that has been shown to have reliability & validity (Newcomb, 2010), is The CVI Range (the content of the 2018 edition of The CVI Range has not been adapted-only the cover sheet and explanations in the scoring guides have been expanded to provide in-depth explanations of test items).
The Perkins Roman CVI Range Endorsement was created to meet a need in the field ( CVI Range Endorsement letters of support are available upon request). Due to the widespread use of The CVI Range, it became necessary to provide a method for CVI providers to demonstrate their ability to conduct this test with fidelity. The ultimate hope is that university programs will take responsibility to teach the methods associated with The CVI Range at which time, the need for the Perkins Roman CVI Range Endorsement may not be necessary. Until that time, parents and professionals are requesting the assistance of an individual who has demonstrated the ability to score The CVI Range with accuracy. And it is also true that those who obtain the Perkins Roman CVI Range Endorsement are contributing to a body of data illustrating the inter-rater reliability of The CVI Range.
It is clear that Resolution 2018-001 posits that The CVI Range is “but one assessment…CVI”, when in fact it currently is the only comprehensive one which is evidence based and successfully undergone peer review. The misleading statements in the Resolution may potentially have an impact on my professional reputation and on my ability to earn a living in my profession. I require AER, to make corrections in the document in accordance with the point by point notations I added to correct the misinformation in the current document. It is important that you send this notice as well as the revised Resolution to your membership. The corrections must be available in a public forum. Upon your request, I would be happy to share my line by line edits with you. Please know that I offer my assistance in crafting a new Resolution or, in any way that I can contribute on behalf of children, students, and families impacted by CVI.
Christine Roman Lantzy, Ph. D.
No. Of course not. Please don’t get me wrong, improving functional vision is really quite important. I talk about it all the time. I think it is critical. In fact, every provider who works with children who have CVI should have an expectation of improving vision. Not a wish or a hope or a notion, but an expectation of improving functional vision.
For a number of years, I described improving vision into high Phase III as the endpoint. I would emphasize the need for CVI Range scores to continually improve until every child with CVI ultimately attains Phase III CVI status. A lofty goal, yes, but one that I believed raised the expectation for educators including me. Then, somehow I began to realize that individuals with CVI who reached Phase III had some special abilities. They were able to not just look but to understand what they were looking at. Sometimes, children who were in or approaching Phase III could associate a word with an associated target. I noticed that they could compare a new concept with one that they already knew. They weren’t just looking, they were understanding what they saw. It was at that point that I realized that seeing, language, and cognition have a synergistic relationship.
So, my next steps were to analyze the key factors that helped an individual with CVI begin to actually understand what they were looking at. Clearly, adaptations to materials were the first step. If a child with CVI does not first have access to visual materials, environments & interactions, then the rest is lost. I rely on scores derived from The CVI Range to guide the process of the necessary adaptations for each child. Then, I must help the child with CVI begin to disassemble the visual “kaleidoscope” using specific teaching methods. I have to help that individual learn to identify the defining features of a visual target and pair these salient features with language that is succinct and consistent. In other words, it is not enough to merely look at an image or object that is “cat”; it is mandatory that the child have a way to look at the novel image, recognize critical details, and confirm that, for example, the presence of triangle-shaped ears & whiskers likely indicates that the image or object is a cat.
Competence in integrating the use of vision with learning becomes pretty clear when reading IEP goals written for students with CVI. In fact, the words in the vision portions of the IEP tend to either make my heart light or filled with dread. For example, when I read that that a child with CVI is expected to “learn to visually track an object 180 degrees”…dread. When I read that a child with CVI is expected to “learn to look at themselves in a mirror”…dread. When I read that a child with CVI is expected to “learn to look at complex pictures”…dread. When I read that a child with CVI is expected to “look at high contrast, novel materials”…dread. On the up-side, these goals at least indicate that the child has some degree of direct vision service.
Competence in working with children who have CVI may be far more complex than the children themselves. The skill set requires the teacher to have a deep understanding of the characteristics of CVI through all three Phases. It requires knowledge of how children learn, birth through young adulthod. It requires the ability to know about the skills necessary for competence in reading, math, communication, positioning, & social development. It requires the ability to engage in the environment, understand the environment, and whenever possible, move independently and safely through it. It requires an understanding of nutrition and anti seizure medicines. It requires the ability to know about and believe in neuroplasticity. It requires the ability to read the cues of a child who cannot tell adults when they are fatigued, frustrated, or hungry. It requires a master teacher and a champion.
So, improvements in functional vision are always a goal. But this goal must be reflected in the skills the child has obtained because of the integration of learning with vision resulting in greater inclusion in their world. It is not a job for sissies but when embraced with knowledge and dedication, the rewards are stupendous.
I get the question all the time, “Is there some place I should live so my child can get a teacher who knows CVI?”. Well, that is a difficult question. It is obvious that most of the intense training based on The CVI Range has hovered around the east coast. But there is no guarantee that moving to Connecticut or Massachusetts will result in your child being properly educated. None the less, parents certainly try this tactic. It is not uncommon for families to maintain two addresses or uproot completely in pursuit of the teacher who embraces their child’s complex needs and actually knows how to teach using the CVI characteristics as the centerpiece of their program. But does such a thing even exist? Is it realistic to expect already overburdened educators to also be experts in the specialized programming needs of children with CVI? Is there a place or tribe of specialists who can reliably teach children with CVI? Where on earth should I suggest parents find such an individual?
This elusive creature, this rare bird does actually exist-we all know the legends and can name their latest habitat and behaviors. It is a thing of beauty, this thing that soars across the landscape of your child’s education and leads the migration of the others to the destination of your child’s future. And, in fact, this breed of CVI specialists have been spotted over the globe though not in large numbers. Perhaps it would be helpful to try to understand them more carefully so we know where one might be found.
The CVIus Adeptus is a creature of strength and unfailing determination. Like it’s relatives who travel thousands of miles a season this creature cannot be blown off track or deterred from the mission it knows to be it’s destiny. CVIus puts in dedicated days and if necessary will stay after school to ensure that the inherent lessons are mastered. It is keenly smart to the point of being cunning. Like its’ relatives, the Raven, the CVIus Adeptus is not naive about people’s intentions and thus builds a team of members who share the goals of the mission to further protect its’ success. Always learning, never static while keeping a watchful eye on the family who in turn add their own learning to benefit the flock. The CVIus Adeptus is fierce, adaptable, intelligent and clever. It is never going to give up. Legend has it that Gene Kranz from the Apollo 13 mission, used the phrase “failure is not an option” after watching this breed at work.
So, back to the question, “Where is the best place for my child with CVI to get an education?”. There is no place. There are only people. My heartfelt advice is to get out your binoculars and carefully scan for that elusive person. You will find one, maybe two. You’ll recognize them. They will find your child a delight. They will intrinsically recognize your expertise. They will agonize over your child’s program and with you as partners, write a clear and powerful IEP. They will listen and hear you. They will lead your team with the determination of a lead bird migrating to the unquestioned destination. They will delight at your child’s successes and never forget your child’s birthday. They will find it exciting to stand in front of the team or in fact the entire school and teach them about CVI. They will sit on the same side of the table with you at meetings. They will investigate plateaus in your child’s learning with the ferosity of J. Edgar Hoover. They will be heartsick when your child’s seizures worsen or when surgery is once again required. They will ask you to come to school and watch you work with their child. They will assess your child fairly and carefully. They will continually take courses on CVI to improve their skills. They will welcome your phone calls on weekends. They will have the ability to apologize.
Of course, the dream is to have CVI experts populate the world in ample numbers. But for now, they may be off the endangered list but likely still a protected species. Only when policymakers see children with CVI as members who have critically unmet needs will we no longer have to work so hard to find the special places with the special breed of people.
In the 1990s I worked at The University of Pittsburgh in the Vision Studies Program. I had the responsibility of planning and providing instruction for future teachers of the visually impaired. Every spring the students were provided an opportunity to visit some of the major agencies associated with our field. One of the stops was The American Foundation for the Blind (AFB), an organization founded in 1921 and the one to which Helen Keller devoted much of her life. My Pitt grad students had the honor of sitting at a conference table with Susan Spungin who was the associate executive director and vice president of AFB. For many years Susan has been recognized as a fierce leader in the field of visual impairment and I was honored when Susan wrote the Foreward to the first edition of Cortical Visual Impairment: An Approach to Assessment & Intervention. Susan is wicked-smart and I have always known her to speak with straightforward honesty. During her meeting with the Pitt students, Susan was discussing a conflict in the field of visual impairment and used a phrase I have never forgotten; she described the futility of the conflict as “rearranging deck chairs on the Titanic”.
That phrase comes to mind so often as I consider the struggle in the field of visual impairment to support the diverse needs of children who have CVI. The struggle does not live within the families of children with CVI but with the policymakers and university professors who continue to define visual impairment from a limited perspective. Children with CVI have a condition that affects the visual processing centers of the brain and their needs are distinctly different than those who have ocular forms of visual impairment. CVI has been identified as the leading cause of visual impairment in developed countries since the 1990s and parents have waited patiently for an appropriate response to their children for over 20 years. But no longer.
A tidal wave of advocacy for children with CVI is in effect. And as we have learned from other major movements in education going back to Brown vs The Board of Education in the 1950’s and the autism awareness movement of the 1980’s, that when parents are mobilized, change is inevitable. There has been a timely eruption of international organizations such as The Pediatric CVI Society and groups on social media such as Start Seeing CVI, CVI Mommafesto, and Little Bear Sees. A podcast called Kaleidoscope provides intimate interviews of the experiences of families who have a child with CVI. Perkins School for the Blind has an eLearning program that offers an array of courses on CVI that have been in high demand by interested providers and parents from all parts of the world. The groundswell is gathering momentum at an impressive rate and it not going to be reversed. The time is now and those of us who are charged with supporting children with CVI would be wise to heed the signs. Right the ship now. Pay attention to the monumental shift in the field of visual impairment. Check out our history, it is not the first major change in how we define visual impairment. And, do not equate CVI with “another condition” like cataracts or glaucoma. CVI is a distinctly different form of visual impairment that requires providers, teacher prep programs, and policymakers to redefine principles, methods, and materials used to provide education for this population. We must re-examine the proportion of pre-service training curriculum that with some exception, currently fails to concentrate on the largest group of children with visual impairment. This is not to suggest that methods for teaching children with ocular blindness or low vision should be set aside. Obviously not. But, attempts to cling hopelessly to the comforts of the status quo will fail. While the field of visual impairment is working so hard to keep the furniture in place, the ship is sinking.
The shift toward a child with CVI representing the “face of visual impairment” is not what many of us were prepared for. But frankly, neither were the families of children with CVI prepared in advance for the numerous and frightening diagnoses they are forced to sort through. We should be grateful, not critical of the parents who have given us this mandate. Disequilibrium is uncomfortable because it shakes our foundation and forces us to make a decision to stay put or to step onto new ground. But it is not the shifting ground that should cause us unrest, it is what we choose to do in response. The response to step in one direction or the other becomes a mirror of our beliefs. In the end, all providers have the opportunity to decide whether parents are simply too demanding, unrealistic, brainwashed, or in denial. Or, we can remember that parents of children with CVI are the same as all of us. They alone know their children with laser clarity and recognize which learning challenges are most rewarding or menial for them. We all want our children to have a full and happy life. Teachers, administrators, therapists, university personnel, and state policymakers would do well to take a moment to ask what we would want if we walked in the shoes of parents whose child has CVI. It is a simple but powerful perspective.