by Brittney Azubuike (MPH Candidate), NCCVEH Intern
The “Use Your Voice: Advocacy Strategies for Children’s Vision” webinar brought together experts and parent advocates to discuss the importance of advocacy, using insurance coverage to access eye care, and implementing effective approaches to improve the state of children’s vision.
Sara Brown, Senior Director of Government Affairs at Prevent Blindness, described the Early Detection of Vision Impairments for Children Act (EDVI) and the organization’s work in advocating for its passage.
Kim Owens, an ASPECT Patient Engagement Program graduate, shared her experience identifying, treating, and coming to terms with her son, Kai’s, vision impairment. She described their long search for answers, visits to many specialists, and advocacy within the health and education sectors to ensure Kai had access to the same education as his peers. Kai went on to perform exceptionally academically and was able to study music. She described Kai’s strong self-advocacy, independence, and “can-do” attitude. Her message to parents: While advocating for your child’s needs can seem intimidating, it is important to keep in mind that your child gains their own confidence and advocacy skills from you.
Nicole Pratt, from the SPAN Parent Advocacy Network, spoke about the significant role health insurance plays in access to eye care and eye treatments. In exploring her son’s diagnosis of retinopathy of prematurity (ROP), she experienced firsthand the differences in standards of care between the different types of health insurance. Nicole advised parents to be proactive about finding a health provider who is as concerned about their child’s well-being as they are and exploring every benefit provided by their health insurance.
Bridge Benard, another ASPECT Patient Engagement Program graduate, spoke of her experiences as a mother of three boys with myopia, amblyopia, and astigmatism. Bridget encouraged parents to speak up, ask questions, and push for screenings when they notice something is wrong. She also emphasized the importance of accessing care and support from early intervention specialists, pediatricians, and school allies, as well as the need for ongoing advocacy for their children with providers. She emphasized that as parents, you are your child’s first and best advocate, and that collaborative efforts with providers and policymakers can build a world without preventable vision loss. Watch Bridget’s presentation here.
Shannon Deere, Save Rare Treatments Task Force, and Susan Hepworth, National Coalition for Infant Health, provided advocacy tips for families and professionals. They stressed that personal stories drive meaningful policy change. Individual family experiences can influence policy decisions and create systemic change for all children facing challenges.
