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6 steps to take after a CVI diagnosis
After your child is diagnosed with CVI, you should follow these six steps involving processing emotions, obtaining assessments and beginning intervention.
You were just told that your child has Cerebral/Cortical Visual Impairment (CVI). You’re probably riding a rollercoaster of emotions, thinking about what it means for your child’s future. You might be filled with worry, confusion, anger, sadness—and maybe even a bit of relief now that you can put a name to what your child has been experiencing. New questions keep popping up in your mind: “What does this CVI diagnosis mean for my child?” and “What can I do to help my child?”
That’s natural, and you’re not alone. In fact, CVI is the leading cause of childhood blindness and low vision. With comprehensive assessment, interventions, and accessible educational programming, kids with CVI can learn to access their world in the way that works best for them. Some use visual skills, some use compensatory strategies, and many use both. Educators, the medical community and countless parents who have firsthand experience with CVI can support you on this complex journey.
It helps to have a road map to get started. Here are six steps to take after your child has been diagnosed with CVI:
1. Process the diagnosis.
Being told that your child has CVI will definitely be emotional. Give yourself space to process your feelings. After all, this wasn’t what you expected. It’s completely normal to feel sad, frustrated, confused or upset. Remember: This is an ongoing process. You don’t need to have all the answers right away, and you’ll probably experience lots of emotions ranging from anger to sadness to hope. Yes, there’s plenty of reason for hope. Some children with CVI can improve their functional vision and sensory skills with with the right support, and we’re here to help you support your child.
2. Talk to your medical provider about:
- Referring your child for vision services, such as state blind programs and services (such as MA Commission for the Blind). Remember that each state has its own definition of eligibility based on visual acuity, visual field deficits, or other criteria.
- Documenting medical necessity for vision services in early intervention (0-3), school system (3+), college (18+), or adult rehab and vocational programs (18+).
- Documenting eligibility for federal quota funds for accessible materials from American Printing House for the Blind (APH)
3. Get CVI collaborative assessments.
It’s so important to remember that each child experiences CVI in their own way. Your child’s intervention plan should be tailored to their unique needs, centered around the question: How can my child best access their learning and the environment? Kids with CVI can build new neural networks through adaptations and instruction, leading to better-improved access to their world using both visual and sensory skills. These key assessments can help:
- CVI Comprehensive Evaluations: The comprehensive evaluation of the impact of CVI, like The Perkins CVI ProtocolSM, is conducted by a teacher with training in the unique visual behaviors of CVI. Learn more about CVI assessments.
- Ocular Functional Visual Assessment: An ocular functional visual assessment (FVA) looks at any possible eye conditions that might also be impacting a child with CVI. It evaluates how and what your child’s eyes see and what supports will create better access to the visual world. It’s conducted by a Teacher of the Visually Impaired (TVI), who specializes in evaluating kids with CVI. It targets the impact of ocular, not neurological, impairments.
- Learning Media Assessment (LMA): A TVI completes the LMA, which evaluates learning media needs (visual, tactile, auditory) and sensory preferences the child will use to access their learning at all times throughout their school day, which is anything the student uses to access communication and symbols: pictures, tactile, print, Braille, auditory, and digital. The results often direct instruction towards multisensory media learning: employing learning through hearing, learning through touch, learning through smell, and learning through vision.
- Orientation & Mobility Evaluation: This evaluation assesses your child’s spatial awareness. It pinpoints how well your child can move safely without and with assistance, inside and outside. Orientation and mobility skills are part of the Expanded Core Curriculum for children with visual impairment.
- Therapy Evaluations: Kids with CVI can often benefit from occupational therapy (OT), physical therapy (PT), assistive technology evaluations and speech-language pathology evaluations. Therapists help these children develop, improve and maintain the skills needed for daily living and for school settings.
- Clinical Ocular Testing: CVI is a brain-based impairment. Professionals will also need to examine your child’s visual health. An ophthalmologist can determine the health of your child’s eye overall. An optometrist looks at eye health and some aspects of visual function to determine the need for glasses.
For babies and toddlers: Contact early intervention services in your area and request a functional vision evaluation and CVI assessment. Learn more in our CVI Early Intervention series.
For school-aged children and up: Reach out to your school team to request a functional vision evaluation and CVI assessment, learning media assessment, and orientation and mobility assessment. Learn more about CVI assessments and dive into our CVI Now IEP Guide.
4. Start the process of accessible learning.
Accessible learning considers the functional vision of the child and their compensatory skills (hearing, touch, taste, and smell) across all facets of the child’s education. Most with CVI highly benefit from a multisensory approach to learning. Once your child has been diagnosed with CVI, it’s important to begin educational programming matched to assessment. If they are currently receiving any services, be sure your child has a TVI on the team so that everyone working with your child knows about the CVI diagnosis and its implications. If assessments have been done, request re-assessments/evaluations to be completed through the lens of CVI, which impacts all development and learning for your child. Early intervention and assessment can help provide your child with access to visual learning and set the stage for improvements in visual attention and visual recognition. Get more information about forming an educational team — and collaborating with them going forward — here. Learn more about the CVI visual behaviors, questions for observation, and examples of intervention strategies.
5. Learn how to help your child at home.
Our homes are places where we can optimize the environment to meet the unique needs of our children with CVI so that they feel safe, independent, and included in daily life. After understanding your child’s CVI, check out our parent-powered How to DIY for CVI Accessibility in each room of your home. Many supports are simple and involve helping your child use prediction, memory, color-coding, and visual and nonvisual skills in their daily routines. Strategies to capitalize on the child’s other senses are also valuable, such as narrating events or describing visual features of objects for your child. Check out our parent advocacy and support section on CVI Now to learn more about how to support your child with CVI. An individualized assessment that focuses on your child’s specific needs will help you make just the right adaptations.
6. Know you’re not alone.
Your journey is completely unique but remember: Many parents just like you have experienced similar feelings. CVI is the leading cause of visual impairment in children in the United States. Research is constantly evolving, and there are lots of resources to guide you. The CVI community will help you develop advocacy skills, understand approaches to education, and discover ways to guide your family’s journey.
Lean into the CVI community and our CVI Now services
- Lean in. Sign up for a 1:1 CVI Parent/Caregiver Support call.
- Find CVI community support on Facebook at CVI Now Parents.
- Explore our resources on communication, learning, and at-home strategies that can help your child access their world.
- Build your knowledge and advocacy skills with our CVI Now Early Intervention series and CVI Now IEP Guide.
- Read stories from other CVI families and individuals with CVI.
- Stay in the know. Subscribe to our newsletter and follow us on Instagram.
