Q&A
How 2 ELP alumnae hope to expand CVI awareness in India
Discover why Shefali and Beula want to expand CVI awareness in India and how they hope to ignite change in their home country.
Cerebral/Cortical Visual Impairment, or CVI, is the leading cause of childhood blindness and low vision. While we are still uncovering all there is to know about this brain-based visual impairment, Perkins School for the Blind is leading global understanding through training and collaboration with educators around the world. However, the level of CVI awareness varies from country to country. In India, CVI awareness is low, but two women are ready to lead change in this field.
We reached out to two recent Educational Leadership Program (ELP) graduates, Shefali (class of 2022) and Beula (class of 2023) to learn more about their experiences on Perkins’ campus, how they hope to use this knowledge, current and future projects, and why it’s important to expand CVI awareness in India.
What did you enjoy about being on Perkins’ campus?
Shefali: Everyone [at Perkins] was so warm, welcoming, and enthusiastic to teach, as well as learn. They are always open to answering any questions or taking an input. It was especially wonderful because it gave me a sense of belonging and comfort but mostly made me realize that it was such a holistic child-centered approach.
I loved how positive everyone was and how the smallest achievement and accomplishment of every child was celebrated. CVI was a new concept for me and the immense knowledge I received from the teachers and professionals was overwhelming. Initially I felt incompetent, but everyone was so encouraging and provided me with extra notes, support, and resources that made me confident.
Beula: My learning experience with the CVI Now team. I was particularly interested in learning about CVI through the ELP. The specific learning opportunities provided by the CVI team allowed me to participate in assessments, parental interviews, personal interactions, etc. These experiences helped me upgrade my skills and knowledge in this field. I feel privileged to have taken part in the Perkins eLearning programs. I completed 46 courses on CVI and related topics, which I otherwise wouldn’t have been able to access.
How did the ELP prepare you for working in the CVI field now?
Shefali: Perkins helped me in understanding how to screen, assess and evaluate children with CVI, the environment we need, the extremely vital role of the family and the methodologies used to provide possibilities to every child to reach their true potential.
It was the complete experience of not just learning the process of assessing and using methodologies but to learn and understand how it was being woven into different aspects of children’s everyday living which thereby made them independent, self-reliant and empowered.
My goal is to develop a nuclear model for my state, Rajasthan, and reach out to as many children with CVI as possible in the urban and rural areas.”
Shefali
Beula: Coming from working at an eye institute, I am quite familiar with CVI. While I had a grasp of the medical background of CVI, I lacked confidence in planning child-specific interventions. The various approaches to CVI presented in the literature were perplexing, as each suggested different methods. I was uncertain about which facts to follow and on what basis.
When I shared my keen interest in learning about CVI with Lisa Jacobs and Samantha Eyley [ELP team], they responded positively and created opportunities for me to explore this field. This included connecting with the Perkins CVI team and enrolling in eLearning courses. Now I am more confident and have clear knowledge and understanding of CVI assessment and intervention. I know where to begin, how to conduct interviews, what to document during observations, and how to intervene.
I am now confident in implementing CVI care in my organization and training other professionals interested in CVI care. My ultimate dream is to establish a CVI resource center for India.”
Beula
Can you share any statistics on CVI in India?
Shefali: There are no macro level studies available. The national census does not cover CVI. However, some micro level studies conducted mostly in the southern part of India show very high incidents of CVI amongst children with cerebral palsy and multiple disabilities.
Beula: There are a few studies from highly reputable organizations in India highlighting the prevalence of CVI. Due to the use of different parameters for the diagnosis of CVI, there is a potential risk of underestimating or overestimating the prevalence.
Nevertheless, overall, these studies indicate a higher number of CVI cases, making it a leading cause of pediatric visual impairment. In our institute, LV Prasad Eye Institute, we observe that out of all children newly diagnosed with a visual impairment, 18% – 20% of them also have CVI.
Was there anything particularly challenging when you returned home?
Beula: Thankfully, upon returning home, I didn’t encounter any significant challenges. I came to Perkins with a clear goal to make the most of my time and fully immerse myself in the enriching learning environment. I’m truly content with the conducive atmosphere that enabled me to accumulate a wealth of knowledge.
My primary objective was to enhance CVI services within my organization, a goal that had been thoroughly discussed with both the management and my team. Through my participation in the ELP, I successfully achieved this objective.
As a result, the implementation of these plans upon my return to work has been smoother, fueled by the enthusiasm of my team and management to execute the proposed ideas.
What are some cultural differences between the US and India that you noticed when working in the CVI field?
Shefali: CVI is a term that is still comparatively a new and a complex term to understand in India. The idea that with medical interventions (medication and/or surgeries) or with therapies a child will eventually not have CVI still exists at large amongst families as well as many professionals.
I find that when a situation is explained to the parents, families, caregivers in a relatable manner, they are able to understand their child and CVI better. As I learned at Perkins, I believe that “every child can learn,” and families and professionals need to work together to make the child an independent, dignified, and empowered citizen of the country.
Beula: Notably, awareness of CVI is significantly lacking in India, even among ophthalmologists. This deficiency often results in delayed intervention. Also, there is a cultural barrier in disclosing personal details, especially related to disability.
I noticed that CVI interviews even included school teachers in the US, and they were actively involved in the management plan as well. Connecting with teachers in India proves to be extremely challenging.
In India, because of time constraints, we often have to rush through assessments, which can mess up our scheduling for proper evaluations. It’s quite different from the United States, where there’s more leeway to take our time and do thorough assessments. There is a tendency among most of our parents to expect immediate solutions and quick fixes, whereas I observed a more balanced and patient approach in the US.
Another significant cultural difference lies in our communication style. We tend to talk a lot and provide extensive instructions, often without allowing the child time to process and respond. This is particularly important for children with CVI, considering their “latency.” At Perkins, I observed that teachers allow enough wait time before prompting the child again with instructions.
Where do parents and families find support for CVI in India?
Beula: The understanding and awareness of CVI in India is still in its early stages. When it comes to services, we have only a handful of professionals who have received some form of training, and there are only a few organizations that offer specialized CVI care.
As a result, these children often find themselves receiving care in general rehabilitation facilities, such as schools for the visually impaired, organizations catering to children with multiple disabilities, and individual therapy centers.
In rural India, the situation is even more challenging. Many of these children are confined to their homes due to the absence of service centers in villages.”
Beula
What was the biggest myth or misconception about CVI in India? Is it the same in the US?
Shefali: As per my personal experience, many common myths or misconceptions about CVI in India are very similar to the US. Some of the myths are as follows:
- All visual problems are strictly related to the anatomy and function of the eye.
- All visual behaviors and characteristics manifest the same in every child.
- CVI is curable and is NOT lifelong with medication and therapy.
- Children with CVI can see only what they want to see.
Can you share a moment, person, or experience at Perkins that positively impacted you?
Shefali: My time at the cottage where I worked with my student. Learning more about her and developing activities that we both spend quality time doing such as: karaoke nights, painting nails, evening strolls, fun gym exercises with our favorite music playing in the background, or celebrating different holidays together.
Understanding when she wanted her privacy and assistance from me was a big learning moment because we as caregivers can overdo the amount of assistance that the children require (like during shower or meal time). It was refreshing to learn when to step in and to step back and still be able to develop a beautiful bond with the child.
Beula: Zac, a student with low vision and CVI, whom I had the privilege to work with, left a profound and lasting positive impact on me.
To be honest, during the initial weeks, I wasn’t entirely comfortable working in the cottage. Despite assisting with tasks such as serving food, cleaning dishes, and arranging tables for the students, I felt a certain disconnect. I had a sense that I wasn’t learning anything new or contributing my time in a meaningful way, often wishing I could allocate my time differently.
Things changed when a shortage of cottage staff led to a request for me to assist Zac with his dinner. Zac had persistent feeding difficulties. Although I felt anxious and hesitant, I agreed to help him with his meal. Remarkably, that night, Zac completed his entire meal without any fuss, surprising not only everyone in the cottage but also me.
This experience marked the inception of a deep connection between Zac and me. Despite his non-verbal communication and other challenges he faced, we discovered avenues to comprehend each other. This mutual understanding led to unspoken appreciation and genuine affection. Zac even demonstrated how to communicate his desire for his favorite episode of “Clifford the Big Red Dog” on his iPad.
Our interactions taught me to interpret his non-verbal cues and preferences. Until my responsibilities in the cottage concluded, Zac and I shared genuine enjoyment in each other’s presence. With Zac, I learnt the power of total communication.
This interview was edited for clarity
Do you want to build a world where everyone belongs?
Just in the U.S., less than 20% of children with CVI have been diagnosed, according to new research conducted by Perkins School for the Blind with analysis from McKinsey & Company.
The time is now to confront CVI — because we know we can help children with CVI unlock opportunities if we get them the right diagnosis and intervention.
Expanding CVI awareness in India, the United States, or anywhere, starts with a simple action. Learn, share, support.
