Article
The Perkins CVI Protocol Platform
A first-of-its-kind digital assessment tool based in scientific research and inclusive of all kids with CVI.
The CVI Protocol Platform
At Perkins, we believe that all children can learn to access their world.
That’s why we’re excited to introduce The CVI Protocol Platform, a whole-child initiative tailored to reach as many families, educators, and medical professionals as possible around this shared mission. Collective wisdom ensures greater understanding of CVI’s impact.
Our goals for The CVI Protocol Platform are twofold: assessment for people with CVI and collaborative mentoring for educators through
- A comprehensive, holistic assessment through The CVI Protocol Platform, a tool for all kids with CVI, anywhere in the world
- A comprehensive report that details how the student is impacted by CVI and the skills they use for access, along with suggested recommendations for educators to choose based on assessment results.
What are the core beliefs of The CVI Protocol?
At Perkins, we believe that:
- All kids with CVI are visually impaired.
- All manifestations of CVI are significant and a big deal for the individual. We must always center empowerment, agency, and autonomy when working with and supporting people with CVI.
- People with CVI have a right to access the world in the way that works best for them. Some use vision, some use other sensory skills, and most use both.
- CVI is often one piece of a complex diagnosis, with co-existing ocular conditions.
- Each person with CVI is unique in their ability to develop or recover skills.
- Each person with CVI is unique in their brain involvement, visual experiences, compensatory skill use, language, and motor and memory ability.
- Compensatory skills are a support to visual development and understanding.
About the CVI Protocol Platform
The diagnostic rate of CVI is less than 20%. For every diagnosed patient, there are four more likely cases of CVI. Many kids with CVI are missed. A comprehensive assessment can help support a diagnosis of CVI by a medical professional.
The CVI Protocol Platform offers:
- a structured set of assessment instructions, programmed into an online digital tool created by Perkins
- a methodical assessment of a student’s 16 visual behaviors and compensatory skill use in consideration of the student’s overall skills and presentation
- online automation, making the assessment process more collaborative and convenient
- a digital way to track observations and automate processes between different participants
- the ability to assess a broader range of CVI manifestations for a wider range of students in a broader set of environmental contexts
- a comprehensive, flexible, and child-centered approach based on current research, designed to include all students with CVI and all aspects of visual behaviors and compensatory skills
How we developed the framework for the CVI Protocol Platform
We designed and trialed a component of The CVI Protocol Platform in conjunction with EdCount; independent consultants focused on research design, validity, and reliability. We compiled a research library with 120-plus articles informing the design of the Protocol, conducted 115 assessments using the new framework, vetted the tool with eight leading medical researchers, and trialed the parent interview of The CVI Protocol Platform with TVIs from 11 states and found a high degree of reliability (84 percent), regardless of an individual’s prior knowledge of CVI. The digital platform allows for dynamic growth and development.
The Perkins CVI Protocol Platform is:
- Free
- Completely digital, accessible from anywhere at any time, no special software required
- Parent-focused, with key opportunities for family input every step of the way, including for student sketches and doctors’ letters
- Available to TVIs and related service providers; TVIs will be able to complete a thorough assessment using the platform
- Comprehensive, focusing on a child’s complex visual and compensatory skills
- Designed to understand your child holistically, identifying the behavioral, cognitive, and social-emotional skills that influence learning
- Grounded in science, with Perkins’ ongoing commitment to cutting-edge research
Key parts of the CVI Protocol Platform
- Student Portrait: This identifies the student’s strengths and interests, parent concerns, CVI diagnosis status, comorbidities including ocular impairments, current communication skills, current motor skills, and current compensatory strategies
- Parent Interview: Parents answer a set of questions to help the TVI better understand how the student is using their vision and other compensatory strategies at home to recognize and interact with their materials, surroundings, and family members. There are two sets of parent interview questions: one set for students who mainly use their vision as their primary sense, and one set for students who mainly rely on their compensatory skills (i.e. touch, smell, hearing) to interact and recognize items around them.
- Teacher Interview: The school team answers questions to help the TVI better understand how the student is using their vision and other compensatory strategies at school to recognize and interact with their materials, surroundings, and staff. There are two sets of teacher interview questions: one set for students who mainly use their vision as their primary sense, and one set for students who mainly rely on their compensatory skills (i.e. touch, smell, hearing) to interact and recognize items around them.
- Observation Protocol: This offers a thorough list of ideas of what to look for when observing a student for this CVI evaluation.
- Direct Assessment Protocol: This provides a thorough list of ideas (with concrete examples) for how to directly assess a student as part of this CVI evaluation. This section also includes an Assessment Planning Checklist for the TVI to use as a concrete way to document what activities he/she will do as part of the direct assessment.
- Ongoing Progress Monitoring: This is a way to document student progress in between CVI evaluations.
Outputs of the CVI Protocol Platform:
- Student Sketch: This preliminary report includes precursory information from the Student Portrait, Parent Interview, and Teacher Interview. The user can make pertinent additions, such as information from medical and educational reports, along with adding in more information from the interviews.
- Doctor Letter: This letter includes preliminary information from the Student Portrait around diagnosis status and co-occurring ocular conditions. This letter, along with the Student Sketch, can then be shared with the student’s medical provider to help support a diagnosis of CVI and help gain a referral for TVI services.
- Evaluation Report: This includes preliminary information from the Student Portrait, Parent Interview, and Teacher Interview. The user will have the ability to add in pertinent information, such as details from medical and educational reports, along with adding in more information from the interviews, observations, and direct assessment.
The Perkins CVI Protocol Platform is in development. We’re building a secure, digital assessment tool. Sign up here to be the first to know when it’s ready. In the meantime, read about the 16 areas of assessment on which we’re building this ground-breaking CVI Protocol Platform.
Every person with CVI has a right to life-changing access. Learn more about the leading cause of childhood blindness.
What sets the CVI Perkins Protocol apart?
Research-based
- Grounded in the most current scientific research and currently being vetted by 15+ leading medical experts
- Developed in collaboration with leading academic research scientists
Inclusive
- Takes an inclusive, whole-child approach to best understand the child’s unique learning needs
- Offers embedded learning opportunities, making it accessible for TVIs regardless of prior knowledge of CVI
Innovative
- Digital format allows the tool to evolve with the science, representing the most current understanding of CVI
- Digital format enables every child with CVI, no matter the zip code, to be comprehensively assessed and supported
