I don't know where to start. Who do I call first?

Under 3, call early intervention. Find your state's number on the CDC's early intervention contact page. Age 3 or older, write to your school district's special education office and ask for an evaluation.

How do I find a doctor who knows CVI?

Look at the Perkins CVI Doctor Directory for your state, and ask your nearest children's hospital whether it has a CVI clinic or a neuro-ophthalmologist. Before you book, ask the office: "Does the doctor diagnose cerebral or cortical visual impairment?"

Are the Facebook groups worth joining?

For many parents, yes. They are private, so you have to ask to join and answer a few questions. They are good for "has anyone else seen this?" questions. They are not a substitute for your child's own team.

Where to find real help for CVI

We opened every link on this page in October 2026. Everything is free unless we say it isn’t. We don’t rank these groups. They work in different ways, and many families use several.

If you only do one thing this week

Your child is under 3. Call your state’s early intervention program. You don’t need a doctor’s referral to ask for an evaluation.
Your child is 3 or older. Write to your school district’s special education office. Say: “I am asking for a full evaluation for my child, including a functional vision assessment by a teacher of the visually impaired.” Keep a copy.
Either way, book the free Perkins parent call (below). It’s 30 minutes with someone who has been where you are.

Not sure what to write? See IEP basics and letters and emails.

Understand CVI

National Eye Institute: Cerebral Visual Impairment. Best for: a calm, trusted overview from the US government. For: new parents, relatives. Free.
American Academy of Pediatrics: What Parents Need to Know. Best for: signs, causes, diagnosis and services, written by two pediatric eye doctors. For: new parents, and a page to show your pediatrician. Free.
Perkins CVI Now. Best for: going deeper. Learning guides, an IEP guide, family stories and webinars. For: parents and teachers once the first shock has passed. Free. It’s a big site, so pick one guide at a time.
CVI Scotland. Best for: a free online course, everyday strategies, and blogs by adults with CVI. For: parents of older kids, teachers, adults with CVI. Free.

Get a diagnosis or an assessment

Perkins CVI Doctor Directory. Best for: names of doctors, by state, who may be able to diagnose CVI. For: parents who suspect CVI. Free. Perkins says it’s a work in progress and not an endorsement. Many states have few names or none.
Your nearest children’s hospital. Ask if it has a CVI clinic or a neuro-ophthalmologist (a doctor for vision problems that start in the brain). One example: the Cincinnati Children’s CVI Clinic, where an eye doctor, a vision teacher, a mobility specialist and an occupational therapist see the child together. It has a wait list. Paid by health insurance.
AAPOS Find a Doctor. Best for: finding any pediatric eye doctor near you. For: families with no CVI doctor nearby. Free to search. It doesn’t show who knows CVI, so ask the office before you book.
TSBVI CVI Flowchart for Families. Best for: a two-page map of the steps, from “something seems different” to services. Made in Texas, useful anywhere. Free PDF.
State schools for the blind and state vision agencies. Many run outreach for families and schools across the state. Find yours on the APH ConnectCenter resource list. Free.
State deafblind projects. Best for: kids who have both vision and hearing loss. Find your state’s project on the list. Free.

Before a visit, read the doctor visit page.

Get services

Early intervention, by state (CDC). Best for: babies and toddlers, birth to 3. Services are free or low cost. Ask for a teacher of the visually impaired (TVI) to be part of the team.
Your school district. From age 3, vision services usually come through school, on an education plan called an IEP. Services are free. Ask for a TVI and an orientation and mobility (O&M) specialist.
Find your Parent Center. Every state has a federally funded Parent Training and Information Center. They help families with special education. For: any parent dealing with a school. Free.
Perkins 1:1 CVI Parent Support. Best for: a 30-minute video or phone call with a CVI parent at Perkins. For: new parents, or anyone stuck. Free. It doesn’t include a detailed IEP review.

Talk to other parents

The Facebook groups are closed. You ask to join and answer a few questions first.

CVI Now Parents (Perkins). Best for: a moderated group of parents and caregivers only. For: parents at any stage. Free.
Cortical Visual Impairment (CVI) Awareness. Best for: the biggest and oldest group, with years of answers. For: parents who want lots of voices. Free. Answer both join questions or you won’t be let in.
CVI Society Forum (UK). Best for: parents, carers and people with CVI sharing ideas. For: UK families and anyone who likes a smaller group. Free.
Smith-Kettlewell CVIers Discussion Group. Best for: a Zoom group for parents and older kids with CVI, with clinicians and teachers there to support. Adults with CVI are welcome. Free. Register on the page or email seelab@ski.org to ask about the next meeting.
PCVIS (Pediatric Cortical Visual Impairment Society). Best for: a page for newly diagnosed families, an annual meeting and webinars. For: parents and professionals. Articles are free. Membership is paid.

Outside the United States

UK: The CVI Society. A volunteer charity for people of all ages with CVI and their families. Runs an annual convention and the forum above.
UK: CVI Scotland. Free course, tools and blogs, used worldwide.
Netherlands: Bartiméus. A Dutch center for children and adults with CVI. Its English page links to a short cartoon that explains CVI to children, an explainer for adults, and its books.
Latin America: Perkins América Latina. CVI information and videos in Spanish, and a list of trained professionals in Mexico. For Spanish-speaking families in the US, see Recursos en español.

Next step

Just found out? Go to Just diagnosed. Want something to read tonight? Try Books, apps and tools.

From cviexplained.com/find-help/. General information for families and school staff. Not medical or legal advice. CVI is different for every child.