Families need to receive support from medical professionals and information about vision and other related services as early as possible. Here are three things you can do during the appointment to communicate with families about a CVI diagnosis and the resources available to improve their child's quality of life.

1 Discuss findings of the eye examination and diagnosis with the family and care team. Families of children with CVI and their teams (including the TVI) deserve a full explanation of their child’s condition, including other neurologic conditions, disabilities, and ocular visual impairments. This provides a foundation of knowledge for improved multidisciplinary care and treatment plans. In the past, families have been frustrated by the lack of resources and thorough discussion from their child's medical providers. For an example of what families often experience, read this WebMD blog post.

2 Inform parents that many children with CVI will have some improvement in functional vision.  

3 Provide educational and resource materials. It is important to provide a list of websites with accurate information about the patient’s diagnosis, since many families primarily use the internet for medical information. It is also helpful to have pre-printed information ready to give families to share with the people who will work with their child.

A father and his son sit across from a doctor at her desk as she reviews a report. The son stares up at the overhead lights. Credit: Jodi Mora Igual

Written recommendations and referrals for families after CVI diagnosis

Available vision services vary by region. The doctor should direct families of a child with CVI or suspected CVI to appropriate services and advocate for a teacher of students with visual impairment (TVI) to provide a CVI-specific functional vision assessment and intervention plan. Early diagnosis and referral to vision services “may allow a child with CVI to engage more fully in school, activities of daily living, vocational pursuits, and recreational activities.” (Lehman et al, 2024)

Provide a copy of your progress note or compose a letter to the parents with your diagnosis and complete examination findings, including a descriptive visual acuity. In your recommendations state: The child should receive “assessment and intervention for CVI by a Teacher of Students with Visual Impairment, Orientation and Mobility Specialist, and other therapists who are knowledgeable about CVI. This should include a CVI-specific functional vision assessment.” Direct the parents to provide a copy of the report and certification of diagnosis to the child’s school administration or agency providing services. Remember that the child's visual and educational challenges will change over time.

Specific recommendations for treatment, interventions, and accommodations should be discussed with families, documented, and given to families in writing as part of the discharge instructions. These recommendations can help the family and school until a full assessment can be made by the child’s vision team. Referral for services for visual impairment should be made so a full assessment and recommendations can be made by a teacher of the visually impaired, occupational therapist, or other member of a child’s team, as defined by the state where the child resides.

Provide resources to the parents  and ask, “What do you need for your IFSP or IEP?” Here are some resources for parents of newly diagnosed children. Children with a disability that interferes with educational progress who attend school accepting federal funds may qualify for an individualized educational plan, or IEP, under the Individuals with Disabilities Act. It is important to document these needs and communicate appropriately with the family and other members of the child’s multidisciplinary team.