By: Donna Fishman, MPH, Director, National Center for Children’s Vision and Eye Health at Prevent Blindness

“Children don’t know they can’t see.” Vision disorders are oftentimes invisible to families. Children with blurry vision don’t know if there are leaves on trees or eyes on their stuffed giraffe. They don’t know how to tell their parents their vision is blurry because they think they see just like everyone else.

“You don’t know what you don’t know,” reported a mom of a child with special needs when asked about not recognizing vision impairment in her young daughter. Unlike messy rooms, vision impairments are not always easy to detect and correct on your own.

Vision disorders are the fourth most common disability in children in the U.S., and the cost amounts to $10 billion per year. One in four school-age children has a vision disorder requiring treatment and up to 3% of children have amblyopia, or “lazy eye.” The risk of vision disorders is higher in children with special needs, and vision care is one of the largest, unmet needs in this population.

During August, Prevent Blindness observes Children’s Eye Health and Safety Month to raise awareness about the importance of good vision for early childhood development, learning, mental and emotional health, better classroom attention, and social engagement.

Every sector plays a role in ensuring good vision for children. In an ideal world:  

• The early childhood education and care sector works to screen and refer young children who are most at risk of vision loss.
• The education sector, through school-based health programs, assesses student health needs, providing vision screenings and referrals to eye examinations.
• The health care sector assesses children’s vision as part of well-child visits and refers for eye care.
• The eye care sector creates access to quality care for families who utilize public insurance, are uninsured or underinsured, speak a multitude of languages, and represent a diversity of backgrounds.
• The public health system conducts surveillance, public education, engages community partners, and enacts policies that support access to care and treatment.

However, the current systems are fragmented across states and communities — underfunded, overburdened, and inequitable — leaving families (especially those experiencing socially determined barriers to care) with immense barriers to access eye care and treatment. Data from the National Survey of Children’s Health shows that children of families in rural areas with low incomes or low educational levels, where English is not the primary language spoken at home, and/or without consistent medical homes or insurance have lower rates of vision screening and eyecare. Without a diagnosis, there is no treatment.

During Children’s Eye Health and Safety Month, we recognize that the tools to collaborate as professional organizations, communities, and associations, improve systems that foster equitable access to vision and eye care for children, and assist families in their quest for information and care to help their young ones enjoy a lifetime of healthy vision, are within our reach.

Families are a critical part of a child’s health care team. Because vision is central to so much of what we do, the observations and questions that come up in day-to-day life can be critical information to share with health care and eye care providers, especially for families of children with special needs.

Nicole, who did not recognize her daughter’s vision problem, now says that the diagnosis presented “an opportunity” to learn more and receive support from other parents of children with special needs. Her own volunteerism led her to Prevent Blindness’ ASPECT program. “She [the daughter] is more than her diagnosis, but she’s not set apart from her diagnosis,” shares Nicole. She also shares this advice for parents, “Ask questions, understand the process and mindset of a provider, and share your story with — and become a member of — the health care team.” She encourages providers to listen to information from parents, support families, and avoid making assumptions about families.

Stephanie, a mom of two children with vision disorders, highlights the importance of self-advocacy for children with low vision. “I strongly believe that if a child starts early and progressively develops this skill, they have a better chance for academic and personal success,” she says. “This is extremely important when you consider that many adults with visual impairments are, unfortunately, unemployed (about 55%). It is up to parents and professionals to teach, model, and find opportunities for children’s self-advocacy.”

Together, we can create systems where families receive support and children have the best chance for their best sight possible.

For more information, please contact dfishman@preventblindness.org and visit A Lifetime of Healthy Vision – National Center (preventblindness.org)

Prevent Blindness is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.