Advocacy is more than just raising your voice; it's about telling your story in a way that resonates with policymakers and the public. As someone deeply invested in the well-being of children with Cortical Visual Impairment (CVI), I’ve found that sharing personal experiences can be a powerful catalyst for change. Here’s how you can leverage your narrative and activism to impact legislative changes at the state level, with a special focus on the importance of understanding the political context and building allies across the aisle.
Know Your Political Landscape
Before you can advocate effectively, it's crucial to understand the political environment you're working within. In Texas, where I’m advocating for a bill to mandate CVI screening for infants and toddlers, among other related supports, the legislative session is often crowded with competing priorities. This year, for example, school vouchers are undoubtedly a hot topic. It is the number one issue for our Governor. Recognizing this, I’ve strategically aligned my efforts with the Governor’s Committee on People with Disabilities, ensuring that my proposal is seen as complementary to the Governor's agenda, rather than a distraction, and to, hopefully, signal to legislators that the Governor supports this endeavor.
Build Bipartisan Support
One of the keys to successful advocacy is building a coalition of allies from both sides of the political spectrum. Legislative advocacy makes for some unusual partnerships, and I believe it is best to go in simply as a concerned parent and citizen. In Texas, a state with a diverse political landscape even within its one-party dominance, this means reaching out to legislators who may not be immediately inclined to support disability rights but who can be persuaded through compelling personal stories and the presentation of clear, data-driven benefits that hopefully can be aligned with their political philosophy. In other words, find a way to connect your story to their agenda.
Share Your Personal Story
When I testified before the Texas Governor's Committee on People with Disabilities, I shared my own son’s journey with CVI. Sharing this testimony allowed me to put a face to the issue, demonstrating the real-life impact of CVI on families and the urgent need for legislative action. It is vital to pull out the most salient points of your story. You are often only given two to three minutes to speak.
Hello, my name is Mara LaViola. I appreciate this opportunity to talk today. My son, Zachary, was diagnosed with a stroke, cerebral palsy, and autism at 14 months old all on the same day. Zach no doubt has these, but they alone never explained all his challenges. We had significant concerns with his vision, but these were repeatedly dismissed by our doctors and school district and attributed to autism alone.
Finally, a teacher at his school admitted she saw what we saw (she was leaving the district) and at 19, we learned that Zach had cortical vision impairment or “CVI”, a brain-based form of blindness. Although his eyes could see, his brain could not process the images it was receiving. At 20, we learned he was also legally blind, and at 21, we learned he was DeafBlind, all characteristics of CVI. As a result, a cogent argument could be made that my son never had authentic access to an education his entire life!
Zach is not an anomaly; there are too many children like Zach who are blind and we are systemically failing to identify them. I know this to be true because of the latest research on CVI and my own lived experience. In the past two years, I have assisted 20 other Texas families with school-aged autistic children who are now diagnosed with CVI.
I am here today to highlight this urgent issue as CVI is the leading cause of blindness in children worldwide. Nevertheless, CVI is significantly underdiagnosed. Estimates suggest that 1 in 30 children have CVI, yet fewer than 20 percent are identified. And these numbers likely underrepresent the true prevalence according to a recent study by Perkins School for the Blind.
In 2021, The National Eye Institute at the NIH proclaimed that CVI is a priority area in its Strategic Plan, recognizing that CVI IS a public health crisis. Texas must address this. The NEI acknowledges the urgency to identify children early because the failure to do so results in severe educational loss, leading to severely adverse life outcomes.
CVI families face significant challenges, navigating a confusing medical landscape and an educational system that often fails to identify these children or appropriately serve them, depriving them of access to an education that they deserve. These children and youth require medical providers, educators, and policymakers to take decisive action now.
Texas must develop an early screening program for brain-based visual impairments. This program should focus on infants and toddlers with developmental histories associated with high comorbidity with CVI, such as stroke, cerebral palsy, and infantile spasms, to name just a few.
We must devise and maintain a database of at-risk children, monitor them, and educate parents and educators on the behavioral manifestations of CVI.
We must increase the availability of specialized support providers—such as teachers for the visually impaired, co-navigators, and orientation and mobility specialists —this is critical as a tsunami is coming and we are already suffering from a lack of appropriately trained specialists.
Additionally, we must ensure that doctors and schools are appropriately suspecting and evaluating our children, we must expand the definition of blindness in our minds and our policy, and ensure schools adhere to their Child Find duty, and mandate that these students receive systematic instruction in all nine areas of the expanded core (“ECC”) curriculum, which is required for ALL blind and visually impaired students from birth!
The time to act is NOW. Thank you.
Amplify Your Message
After my testimony, I amplified my message on social media, reaching a wider audience and garnering further support. Here’s how I shared the news:
Join Forces With Advocacy Groups
I’m not alone in this fight. By joining various disability groups and participating in the State Education Agency’s Stakeholders Taskforce, I’ve been able to amplify my voice. Collaborating with organizations that share your goals can provide additional resources, expertise, and a larger platform for your message. Many of these groups have policy specialists who can help you identify legislators to target who have both the status and desire to help, even if you do not share the precise reason. For you it may be to help other families, for them, it may mean saving money. Let go of ideology and work for the overall good. Also, do not let perfect get in the way of good enough. Often it takes more than one session to pass a bill and then others to tweak it.
Kathryne Hart (right) and her son visited Senator Sharon Hewitt in 2018 to advocate for the TEFRA (Tax Equity and Fiscal Responsibility Act) Medicaid option, also known as Katie Beckett Waivers, which would allow parents of kids with severe medical needs to waive income qualifications to receive Medicaid services.
Propose Concrete Solutions
In my testimony, I didn’t just highlight the problem—I proposed actionable solutions:
1 Early Screening: Mandating early screening for CVI in infants and toddlers based on developmental histories and medical conditions.
2 Database of At-Risk Children: Establishing a comprehensive database to monitor at-risk children, ensuring they receive the necessary follow-up and support.
3 Increased Funding: Advocating for increased funding to attract and retain specialists, such as Teachers of the Visually Impaired (TVIs), Co-Navigators, and Orientation and Mobility (O&M) specialists trained specifically in CVI. This is a challenge as it will require a fiscal note – that means money. It is always best to have a bill without one, but I do not see how we can make effective change without this. Again, this could change as the bill moves through the legislative process.
4 Expanded Core Curriculum: Ensuring that the expanded core curriculum is provided to these children as early as possible.
The Power of Testimony
Testifying before committees and sharing your story on social media can create a ripple effect, inspiring others to join your cause and increasing public awareness. When I posted about my testimony on Facebook, the response was overwhelmingly positive, with many people sharing my message and offering support.
Moving Forward
As I approach the next legislative session, it’s vital to stay engaged and continue building momentum. By sharing our stories, collaborating with allies, and presenting clear, actionable solutions, we can make a real difference. The journey might be challenging, but with persistence and passion, we can achieve meaningful legislative changes that improve the lives of children with CVI and their families.
Stay tuned for more updates as we work towards a brighter future for all children with visual impairments. Together, we can make a difference!
Carter Hart and his grandmother meet with Louisiana's Governor and First Lady.
Mara LaViola is a member of the PCVIS board and a special education advocate. She has authored legislation notably passed at the state level and received honors for her dedication to enhancing the lives of disabled students. As a CVI parent, the Chief Operations Officer for Texans for Special Education Reform, and a board member of the Autism Society of Texas and Texas Parent to Parent, Mara leverages her experiences and achievements to bring about positive systemic change.