Families and Caregivers

Newly Diagnosed
What to do once you learn that your child has cortical visual impairment (CVI)

Step 1: Learn About CVI
Begin the learning journey to better understand CVI and your child. In addition to the information on the PCVIS website, below are links to important resources.

Foundational Books
Cortical Visual Impairment: An Approach to Assessment and Intervention
(Second Edition), Dr. Christine Roman-Lantzy
Cortical Visual Impairment: Advanced Principles
, Dr. Christine Roman-Lantzy
Vision and the Brain: Understanding Cerebral Visual Impairment in Children, Drs. Gordon Dutton and Amanda Lueck

Online Resources
Little Bears Sees, a helpful website for families new to CVI
CVI Hub for Parents, a range of resources, webinars, and videos from Perkins School for the Blind
CVI Resources, Dr. Roman-Lantzy
Roman on CVI, Dr. Roman-Lantzy’s YouTube Channel
CVI Teacher Blog, Ellen Mazel, TVI
Paths to Literacy: CVI Resources, blog posts focused on approaches to literacy for children with CVI
Blindness of the Brain: Explaining CVI, Dr. Lotfi Merabet

Step 2: Get a CVI Range© Assessment
In order to understand your child's visual functioning, get a CVI Range© Assessment from a Perkins-Roman CVI Range Endorsed Professional. The CVI Range is the functional vision assessment for individuals with CVI. All interventions, adaptations, and strategies must be based on a child’s CVI Range score. Learn more about the CVI Range.

Step 3: Inquire About Vision Services
Contact your early intervention program, school system, or state special education office to inquire about vision services for your child. Children with CVI require vision services. States have different eligibility requirements for identifying students with a visual impairment, so as a parent of a child with CVI, you may need to advocate for services. Children with CVI require direct services from a Teacher of the Visually Impaired (TVI) and an Orientation and Mobility (O&M) Specialist. The TVI and O&M specialist must have extensive training on CVI to appropriately serve your child. Learn more about the IFSP and IEP

Step 5: Read and Hear Stories From CVI Families
With CVI being the leading cause of visual impairment, there is a large community of families raising children with CVI.  You are not alone. Connecting with other families will help you along your CVI journey. You are now part of a growing community of families and professionals coming together to find ways to better serve kids with CVI. Check out the links below to learn more about the experiences of other families with children with CVI and how to help spread awareness of CVI.

Start Seeing CVI
See CVI, Speak AAC
CVI Momifesto
Everyday CVI
Kaleidoscope: CVI Podcast

Step 6: Join Parent Communities
The New York Lighthouse Guild runs a weekly tele-support group for CVI parents from across the country. For more information, call 800-562-6265, send an email to [email protected] or go to LighthouseGuild.org/parentsupport. If you're into social media, join online communities on Facebook. Here are a few:
Cortical Visual Impairment (CVI) Awareness, CVI Phase III Community, CVI Neuroplasticity Research Group, See CVI, Speak AAC.

CVI and the IFSP/IEP

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