Medical Professionals Don’t Recognize or Look for CVI
Far too common among parents of kids with CVI is the story of struggle to obtain a correct diagnosis. Misdiagnosis and underdiagnosis are far too common and both lead to barriers acquiring access to appropriate educational services. Rachel Bennet declared at the 2019 Perkins CVI Symposium that: “Children with CVI have a right to an early diagnosis. They have a right to effective vision services. They have a right to an appropriate educational program (Bennet, n.d.).” Unfortunately, without the first, neither the second nor the third of these can take place. Without the CVI diagnosis, services cannot be provided and the educational environment will certainly not take the most accessible form. It took this mother and many like her years of advocating and many visits to various medical professionals before she finally found one who was knowledgeable enough about CVI to accurately diagnose her child. With the rising numbers of children with CVI, it is no longer acceptable that such a huge percentage of medical professionals remain ignorant to its impact and unable to recognize its symptoms (Joseph, 2021). The way many families with CVI children are treated is no less than discriminatory when their needs go unmet by both the medical and educational establishments (2019 CVI, 2019).
The Trend of Low Expectations
Many parents of children with CVI quickly discover the common tendency among teachers to hold very low if any expectations for these students (Joseph, 2021). Unfortunately, the effect goes deeper than simply the shortsightedness of the teacher. Their attitude about a student will affect the quality of instruction delivered, the effort put into adapting instruction, and the degree to which the student is encouraged to participate in classroom activities. It is not only a few negative teachers who affect the quality of education these students receive. The system itself influences teachers towards this by lowering or not setting proper standards that reflect what the student is capable of learning (Joseph, 2021). Some even resort to simply keeping them occupied rather than providing any actual instruction in what has been referred to as “educational babysitting”(Farnum, 2010).
Reduced IQ Test Validity for VI Kids
One of many distressing frustrations for parents of children with CVI, and those with multiple disabilities including vision, is how unfair it is that their child’s intelligence is assessed using methods that were designed for visual readers (2019 CVS, 2019). Not only did I hear about this upsetting state of affairs in the Perkins Symposium parent panel, but I also personally know a parent who has experienced this heartbreaking situation. Her daughter had also had many brain surgeries but had only lost vision recently so her IQ could not be accurately measured using one of these print tests. The parent felt she got a much lower score than she should have because of the inaccessible format and because points were taken off since she needed read-aloud.
Resources
2019 CVI symposium. Perkins eLearning. (2019, August 28). Retrieved February 8, 2022, from https://www.perkinselearning.org/cvi/educators/symposium/2019
Bennet, R. (2021, September 30). Henry’s CVI diagnosis journey. Perkins School for the Blind. Retrieved February 8, 2022, from https://www.perkins.org/henrys-cvi-diagnosis-journey/
Farnum, K. (2010, October 29). Stop! The Cart is before the Zebra: A Call to Define an “Appropriate Education” for Students having MI/CVI. Retrieved February 8, 2022, from https://umb.umassonline.net/bbcswebdav/pid-1811128-dt-content-rid-13073349_1/courses/B3130-13569/B3030-12928_ImportedContent_20210108101702/externalFiles_20210102010623/courses/B2530-11795/Stop%21%20The%20Cart%20is%20before%20the%20Zebra%20%20A%20Call%20to%20Define%20an%20%20Appropriate%20Education%20%20for%20Students%20having%20%281%29.html
Joseph, E. (2021, July 13). Seeing what was unseen for my son. Perkins School for the Blind. Retrieved February 8, 2022, from https://www.perkins.org/seeing-what-was-unseen-for-my-son/https://www.perkins.org/seeing-what-was-unseen-for-my-son/