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Trusted resources for CVI, blindness, and low-vision
A list of trusted CVI, blindness, and low-vision resources to help you find knowledge, guidance, and ongoing support in many forms.
Remember: You’re never alone! Our community is supportive and steadfast. We’ve heard from so many families whose networks have provided advice about finding providers, advocacy, camaraderie, and much more.
Here are blindness and low-vision resources that we trust. Check back often; we’ll continually add to this list! And please suggest your own. We’d love to hear from you.
Active Learning is a Perkins-endorsed approach based on the work of Dr. Lilli Nielsen, a longtime developmental psychologist and preschool teacher with the National Institute for Blind and Partially Sighted in Denmark. It’s a total approach for promoting the development of people with severe multiple disabilities. It features an assessment, curriculum, specifically designed equipment, and instructional strategies that support learners to be active participants in their surroundings.
American Printing House for the Blind (APH) Family Connect
APH supports people of all ages who are blind or low-vision. They provide many disability resources, support groups, advice for working with medical and educational teams, and more.
Their offerings include APH Hive, the Braille Tales program, the APH blog, and the Change Makers podcast. Meanwhile, their Information and Referral Line (1-800-232-5463) fields any questions relating to blind or low-vision kids, offering live assistance, while a handy APH Directory of Services covers a wide range of state-specific blindness-related support.
The Association for Education and Rehabilitation of the Blind and Visually Impaired (AER)
This professional association combines what was once the American Association of Workers for the Blind and the Association for Education of the Visually Handicapped. It offers e-learning opportunities, access to best practices, research, resources, and networking opportunities to members.
The Center for Parent Information & Resources
This hub of information is designed for parents of kids with disabilities: Share your own knowledge, browse research materials, and find important stories touching on topics you might not see elsewhere, such as dating, mental health, and social challenges.
This laboratory investigates mechanisms of normal and abnormal vision and ocular motility in children and adults with special emphasis on CVI, acquired brain injury, strabismus and amblyopia. Their aim is to improve detection, diagnosis, treatment, and outcomes in childhood eye disease through rigorous scientific research, including a current project that explores three levels visual function deficits (HVFDs) in children with mild to moderate CVI (now accepting participants). You can sign up here to join CVI@SKI, a group for parents of children and children with CVI to discuss topics related to CVI. Meetings are held virtually every 6 weeks.
This comprehensive site—set aside time to explore!—offers straightforward information about understanding, assessing, and supporting people with CVI. It’s packed with medical information, educational resources, blogs and videos from people living with CVI, research news, and plenty more.
Visit this active Perkins Facebook group for camaraderie, support, real-time discussions—and to share questions, triumphs, and concerns large and small.
Hadley creates personalized learning opportunities that empower adults with vision loss or blindness to thrive at home, at work, and in their communities, in partnership with the National Eye Institute and the National Eye Health Education Program. They offer a vast array of practical workshops on topics like self-care, safety basics, socializing, and so much more.
The Laboratory for Visual Neuroplasticity
Leader in the field of CVI, and lab director Lotfi B. Merabet, OD PhD MPH leads the Laboratory for Visual Neuroplasticity in investigating how the brain develops and adapts to visual impairment due to brain based (i.e. CVI) and ocular based causes. They use advanced brain scanning to better understand how the brain is connected and responds to visual activities. They are looking for study participants aged 7 years older and diagnosed with CVI or ocular disease/injury to contribute to their research.
National Eye Institute/National Institutes of Health
CVI is a research priority for the NIH. Find information on CVI causes, symptoms, and treatment, plus the latest information on other eye conditions and broader research initiatives.
The National Library Service for the Blind and Print Disabled
This free national library program provides Braille and recorded materials (nonfiction and fiction) to people who can’t see regular print or handle print materials.
National Center on Deaf-Blindness
Funded by IDEA, the center supports state deaf-blind projects in identification and referral for EI and special education services; builds skills for educators serving kids who are deaf-blind through expansion of personnel development opportunities and adoption of interveners and teachers of the deaf-blind; supports state deaf-blind projects and national family organizations to accelerate advocacy; and supports state deaf-blind projects in improving services and outcomes for youth who are deaf-blind. Be sure to check out their family news and events calendar.
The New England Eye Low Vision Clinic at Perkins
We’re known for excellence in clinical eye care, support, and training for optimal use of functional vision within a caring, compassionate environment—focused on your child’s unique needs.
This collaboration between Perkins School for the Blind and Texas School for the Blind and Visually Impaired (TSBVI) is packed with literacy information for parents and educators, from literacy foundations to specialized topics relating to CVI, ELL, and more.Perkins Community Programs
At Perkins, we believe in educating the whole child. From infancy to young adulthood, we’ve got you covered: Explore early intervention and assessment services, curriculum access and vision expertise for public school students, extracurricular opportunities, and more.
Our comprehensive guide provides an accessible, compassionate roadmap for all aspects of the IEP process.
Perkins Independent Evaluations
Our experts offer comprehensive, individualized independent educational evaluations across domains for students ages 3 to 21, including CVI assessment.
Unlock a world of knowledge: Our library circulates more than half a million accessible books, newspapers, and publications in braille, large-print, and digital audio formats each year to thousands of people with disabilities in New England and beyond. Access is free. Find their PDF on Resources for Parents of Children with Visual Impairments here.
Explore the city, join a virtual book club, gain practical job and communal living skills: Our Outreach short courses offer fun, educational, and accessible extracurricular opportunities and activities to public school students who are blind or visually impaired across the United States (with weekend and extended programs).
Perkins Transition Planning Resource Center
We understand that transition planning for adulthood is daunting. We’re here to support you in the journey. We offer checklists, timelines, curated resources, and personal stories to support your family every step of the way.
Perkins Resources for Parents of Children with Visual Impairments
This guide highlights current and readily available resources for parents of young
children with blindness, visual impairment, or visual impairment with multiple
disabilities.
Texas School for the Blind and Visually Impaired
Our friends at TSBVI offer a host of online learning opportunities and resources for families.
Approachable and spirited, this site is a treasure trove for parents of young children with visual impairments. Browse a database of articles written by parents, with lots of actionable first-hand advice on toys, behavioral strategies, sensory play, and more.
