A son with a visual impairment led a graduate student to testify in front of a congressional committee.
On Sept. 12, Jennifer Goddard testified at the Rayburn House Office Building in Washington, D.C., in front of Representative Marc Veasey of Texas and Representative Gus Bilirakis of Florida.
Goddard, who is earning a master’s degree in education with a focus in visual impairment at North Carolina Central University (NCCU), spoke in favor of the proposed Early Detection of Visual Impairments (EDVI) Act. If approved, the act would supply funding for early detection of visual impairments in children.
Her son, now five-years-old, had been diagnosed with Optic Nerve Coloboma, a congenital defect that can affect the iris, lens, choroid, retina and optic nerve. “When you get a diagnosis like that, there is no road map,” Goddard said. “I was grabbing for as much information as I could find.”
She conducted research and her son initially gained a teacher through the state that specialized in working with children with visual impairments. With the Covid outbreak, however, the teaching was converted from in-person to virtual.
“For a visually impaired toddler, that’s pretty impossible,” Goddard said.
After 15 years of working for a digital marketing agency, Goddard decided to switch careers and become a teacher of children with visual impairments. “It’s through working with my son that I gained a passion for this,” Goddard said.
With the help of a federal grant (in return, she agrees to work in the field of visual impairment after graduation), she enrolled in the visual impairment training program at NCCU. In addition to paying for her degree, the grant also pays for Goddard to attend conferences. It was at an international conference organized by the Association for Education and Rehabilitation of the Blind and Visually Impaired that was held in Charlotte in July that she met representatives of a nonprofit called Prevent Blindness. Hearing her story, Prevent Blindness invited her to testify in front of a congressional committee and flew her to Washington DC.
There were up to 50 people in the room, many of them staffers for other congressional members. Goddard was part of a panel with two pediatric ophthalmologists, who spoke about medical aspects of childhood visual impairments. Then it was Goddard’s turn.
She spoke about “the diagnosis piece and the support we got,” Goddard said. “I just walked them through our experience and what a bill like this could mean for families like mine.”
“There is a lot of promise in this bill,” said Sean Tikkun, Ph.D., an assistant professor in the School of Education who teaches in the Teacher of Students with Visual Impairments (TSVI) preparation program and the Assistive Technology for Individuals with Visual Impairments (ATVI) program. Tikkun also coached Goddard in preparation for her testimony.
“It would better achieve early detection of visual impairments for kids,” Tikkun said.
“In many cases, these conditions are treatable,” Goddard said. “Minor surgery or glasses. The earlier we can detect these things, the more successful these kids will be.”
