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Parent Caregiver Resources
Children With Special Health Care Needs

Cortical Visual Impairment Resources

NO PATIENT IS UNTESTABLE: A CVI Q&A WITH DR. BARRY KRAN

A conversation with Dr. Kran on evaluating patients suspected of having CVI, diagnosing CVI, and his approach to working with children, no matter their complexities.

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EDUCATIONAL RESOURCES AND TRAININGS FOR PARENTS AND PROFESSIONALS

Does This Child Have Cerebral/Cortical Visual Impairment

Perkins School for the Blind: CVI Hub – Parent, Educator and District Resources

Perkins School for the Blind: On-Site and Online Trainings for Professionals and Parents

Paths to Literacy: A website resulting from the work of Perkins School for the Blind and Texas School for the Blind, designed to support educators and families in teaching literacy to students who are blind or visually impaired.


INFORMATIVE WEBSITES, FACEBOOK GROUPS, BLOGS, AND SUPPORT FOR PARENTS AND PROFESSIONALS

CVI Teacher: Ellen Mazel, M.Ed., CTVI, Deafblind Specialist, CVI Endorsed Professional

CVI Project Coordinator, Perkins School for the Blind. CVI-specific information shared in support of parents and professionals. Click here for the CVI Teacher’s Blog 

CVI Teacher Diane Sheline, TVI: Provides strategies, suggestions and techniques to parents, caretakers, teachers and other action heroes, who hope to encourage more consistent and efficient use of vision in children with Cortical Visual Impairment. Click here 

Roman on CVI: YouTube videos by Dr. Christine Roman-Lantzy.  Direct sharing of Dr. Roman’s thoughts, perspectives and practices regarding Cortical Visual Impairment. Click here

CVI Momifesto:  Building a community of parents of children with Cortical Visual Impairment. Created by Rebecca Davis. Click here for CVI Momifesto Facebook Page

CVI Neuroplasticity Research Group: Facebook page discussing CVI and related neurological research. Click here for CVI Neuroplasticity Facebook Page

CVI Phase III Community: Facebook page specific to CVI Phase III. Designed for parents, families, educators and professionals who are dedicated to the improvement of children with Cortical Visual Impairment. Click here for CVI Community Facebook Page

Kaleidoscope: The Cortical Visual Impairment Podcast Jessica Marquardt: Parent Advocate for Children with CVI, Sharing Stories of Neuroplasticity and Visual Perception.

CVI Scotland: Provides information on understanding and assessing CVI, as well as resources and support provisions.

Lighthouse Guild: Support for parents. National tele-support groups with weekly CVI tele-support conference calls with fellow parents, and guest speakers.


BOOKS

Lueck, A.H., & Dutton, G. N. (Eds.) (2015). Vision and the Brain: Understanding Cerebral Visual Impairment in Children. New York, NY: AFB Press.

Tallent, A., Tallent, A., & Bush, F. (2012). Little Bear sees: How children with cortical visual impairment can learn to see. Deadwood, OR: Little Bear Sees Publishing, of Wyatt-MacKenzie.

Little Bear Sees: A Non-Profit Organization founded by the family of a child with CVI

Roman-Lantzy, C. (2018) Cortical visual impairment: An approach to assessment and intervention. Second Edition. New York, NY: AFB Press.

Roman-Lantzy, C. (Eds.) (2019). Cortical Visual Impairment Advanced Principles, Louisville, KY: APH Press.

ADVOCACY

Pediatric Cortical Visual Impairment Society: The mission of the Pediatric Cortical Visual Impairment Society is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. Click herefor PCVI society Facebook Page

Start Seeing CVI: A parent’s website/blog, building advocacy and awareness of CVI.

Created by Brenda Biernat. Click here for Start Seeing CVI Facebook Page


PRODUCTS, SERVICES, AND SUPPRT FOR FAMILIES AND CHILDREN WITH CVI

New England Eye Low Vision Clinic: A collaboration of professionals from Perkins, The New England Eye Institute and The New England College of Optometry, the Clinic provides primary and consultative eye care for infants, children and adults who have visual, physical and/or cognitive disabilities.

Massachusetts Commission for the Blind.  In MA, children with CVI are considered legally blind, and are eligible for services and support through MCB.

American Printing House for the Blind: The world’s largest company devoted to researching, developing, and manufacturing products for people who are blind or visually impaired. Promotes independence of people who are blind and visually impaired by providing specialized materials, products, and services needed for education and life. Website includes a section dedicated to Cortical Visual Impairment info/resources.

American Foundation for the Blind – Family Connect: Informational website for parents of children with visual impairment

CVi Connect: A community of professionals and technology that offer hope and confidence in the form of personalized education, training and support for children with Cortical Visual Impairment.