In Louisiana, CVI activism ignites policy change

Big news from Louisiana: State-mandated CVI screenings and more students with CVI can qualify for special education services.

Family with a mom, dad, and two boys painting on a lit up table

At Perkins, it’s our mission to share stories of CVI activism and triumph. When just one kid with CVI receives better access, we all win. It creates momentum. It creates hope.

Now, there’s groundbreaking news for students with CVI in Louisiana. A formalized CVI diagnosis is no longer required to qualify as visually impaired in the state. If a student presents as blind or low vision using a functional vision assessment, they may qualify for a Visually Impaired Exceptionality under special education law. Now, the state also requires a mandated vision screening for CVI if a child has any history of neurological insult or disease.

In Louisiana, the problem was clear: 2019 standardized test scores indicated that only 11 percent of students with disabilities met the Mastery & Above level. Students with low vision or blindness were under-identified in the school setting, which excluded them from services and supports integral to their education. The nationally recognized standard curriculum for students who are blind, the Expanded Core Curriculum (ECC), wasn’t consistently offered across the state. Teachers of the Visually Impaired (TVIs) were provided little guidance in assessing grade-appropriate skill levels for Braille instruction, leaving students far behind in literacy.

What does this change mean? More access for kids. How did this happen? Persistence from Louisiana’s Visually Impaired Coalition. They sought to match Louisiana’s definition of “visually impaired” with the U.S. Department of Education’s definition. 

The problem

Pupil Appraisal teams across Louisiana use a guide called Bulletin 1508 to determine eligibility for special education services for students suspected of having a disability. The U.S. Department of Education, however, updated eligibility determinations in 2017 to clarify that students who have “any impairment in vision, regardless of significance or severity, must be included in a State’s definition, provided that such impairment, even with correction, adversely affects a child’s educational performance.” 

But Bulletin 1508 was never updated to reflect these new guidelines. Kids weren’t getting services. The coalition sought to amend Bulletin 1508 to include an updated definition of visually impaired and an assessment of the ECC for students who are blind. They also recommended that the Louisiana Department of Education convene stakeholder groups to develop Braille standards for Louisiana and promulgate standards across the state.

Meet an activist

Baton Rouge mom Kathryne Hart, one of the parents who supported this change, shared her story of persistence and activism with us. Hart has three kids and works full-time as a global supply planner for Honeywell. Her 7-year-old son, Carter, has CVI. She’s determined to make a better world for him and his CVI peers.

How it started

“This began with a coalition of nonprofits, private providers, and self-advocates in the field of blindness, including the National Federation of the Blind and Louisiana School for the Visually Impaired, led by Robin King and Nabiha Mujahid of Louisiana Accessible Educational Materials, an American Printing House for the Blind federal quota Trustee. Teachers and advocacy organizations were seeing that a lot of kids with low vision were being denied IEPs. Even kids who moved from another state where they had IEPs were told that they could only have a 504 plan.

The state director of Special Education in Louisiana forwarded the Official of Special Education Programs (OSEP) memorandum in late 2017 to school districts, advising them that the two-part process to deny or qualify for special ed, in which a diagnosis is needed before evaluation, should not be used. But the Louisiana Board of Education didn’t update Bulletin 1508, so districts continued to rely on Louisiana’s state definition.

Kids who didn’t quite meet a specific acuity or field of vision loss were getting massive headaches all day because they were using large print and magnifiers — if they got it. And, without a specific acuity number, school districts weren’t offering special education or Braille to kids who needed it.

The National Federation of the Blind strongly believes that anyone who’s visually impaired needs access to Braille. So, a coalition was formed to come up with guidelines to improve outcomes for students who are blind in Louisiana. This VI coalition then started looking into both the promulgated rules for the Department of Education’s special education evaluations, as well as state law. They found that state law was defining blindness based on visual acuity of 20 over 200 or a field of vision no greater than 20 degrees. So the first step to improving outcomes required revising the state definition of visually impaired.”

On coming together as a blind and visually impaired community for the benefit of our kids

“Meanwhile, I’d reached out to some of these organizations since my son was diagnosed in 2016 to help increase knowledge of CVI. I ended up forming an informal advocacy group on social media to improve outcomes for kids with CVI, in which several coalition members participated.  

We asked: Since most of the kids with CVI don’t have a diagnosis, how will this bill include all blind children? The coalition decided to include language in the potential bill to state that a functional vision assessment could qualify a child as blind. We agreed that this would help kids with ocular blindness as well as CVI, because an acuity number is not an indicator of how a child functions in a school environment. This proposal was sent to the Louisiana Legislature, and it passed unanimously.

Next, the Department of Education would issue rules for how to implement the revised law. I showed up to testify in support — but then I read the proposed rules, and they didn’t match what passed in the Legislature. It now specified that kids needed a CVI diagnosis because of one single word: “and.” 

The Coalition argued with me that the proposed rule meant the same as the legislation and got very upset that I held up the process to implement the law when I voiced that the proposed rule didn’t comply with federal law in my public testimony. I reached out to our new director of Special Education in Louisiana with my concerns, and she followed up with OSEP, who confirmed that I was correct: IDEA does not require a diagnosis, and that ‘and’ should be changed to ‘or.’

A functional vision assessment can qualify a child for special education — or a diagnosis. The thing is, even if you have a diagnosis of a vision impairment, you may not qualify for special education. A comprehensive evaluation is required. It’s the same with autism or specific learning disabilities. You see all the time how kids have a diagnosis of dyslexia but can’t get special education. And IDEA requires that states to do a comprehensive evaluation of how all suspected disabilities impact access to education, not just an evaluation of diagnosed medical conditions. So you can’t just say, ‘I’m not going to do that evaluation because you don’t have a diagnosis.’ A diagnosis is medical in nature, while IDEA looks at educational impact, not medical impact.

Because a diagnosis now isn’t required, the Special Education Advisory Panel was very concerned that school districts were going to have to evaluate every single kid with a functional vision assessment. There are not enough teachers of the visually impaired in the United States to possibly do that. So, as part of the rule, a mandatory screening for CVI for any kid who has a neurological history of injury or impairment was added, in addition to the existing acuity screening schools performed upon entry and every two years. 

Basically, if your child has seen a neurologist, then they must be screened for CVI. For now, Louisiana is using the Teach CVI screener. This improvement in screening criteria should catch the vast majority of kids with CVI-like behaviors, at least. Kids who meet the risk criteria for CVI should be assessed to see if a potential vision impairment is creating a barrier of access to their education.”

On not giving up

“Carter was born seemingly healthy in February 2016, but began having a rare form of seizures at three months old and stopped looking at us. Out of concern, I asked parents of other kids with infantile spasms seizures on social media if they had experienced something similar. One of the parents suggested that I read ‘Little Bear Sees’ because Carter’s behavior sounded like it might be CVI. This book led me to Christine Roman-Lantzy’s work, and I began calling local pediatric ophthalmologists asking if they could evaluate for CVI. 

Armed with understanding the behaviors and characteristics of CVI and Carter’s medical history, I cornered the doctor after he completed his medical exam, and he confirmed that my suspicions were correct, and Carter had cortical blindness. I would later learn that Carter was one of the rare few to receive a diagnosis at the earliest age possible: six months old. On average, it takes much longer for a kid to obtain a diagnosis of CVI — if it’s ever diagnosed.

Because Carter had already been diagnosed with infantile spasms, he qualified for our state early intervention services. With this new diagnosis of CVI, a TVI would be added to the team. However, I quickly found out how little the individual who was supposed to teach me how to support my son knew about CVI and how it impacted Carter’s development. When I asked to change TVIs for Carter because ours had only shown up twice, the state agency who oversaw early intervention told me there wasn’t anyone else in my area. We challenged that, and the state ended up having to pay somebody to drive in from another district. But, again, the teacher still didn’t really know much about CVI.

I began to vent my frustrations online:Why aren’t there people who can serve my kid in my state?’ One of the first parents to reach out to me was Rebecca Davis, author of CVI Momifesto, who now works for the Federation of Children with Special Needs in Massachusetts. Rebecca attempted to lay out a road map for how I could increase capacity and knowledge of CVI in my state, as she and others had done in Indiana. It was like drinking from a water hose. It would be a while before I could act on any of Rebecca’s suggestions, but I followed her blog as well as Brenda Biernat of Start Seeing CVI and Lisa Lightner of A Day in Our Shoes to absorb any knowledge I could about CVI and the special education process.

I hit a lot of brick walls when I first began advocating. I reached out to one of the universities who trains TVIs, asking: ‘Could you add a CVI class?’ 

They told me: ‘We can’t be all things to all people.’ What? Why are you not teaching your future teachers about this population? This population makes up the majority of their caseload. More specifically, there was this idea that we shouldn’t serve kids with significant disabilities. There are so few teachers as it is that they should be focusing on the kids who can learn Braille — which never sat right with me.

With a fire lit under me, I contacted the outreach director at the Louisiana School for the Visually Impaired (LSVI), Blanche Faulk. I shared my concerns about the university programs and how we still didn’t have a TVI who knew how to work with Carter, now a toddler with significant multiple disabilities and CVI. Blanche coordinated the first CVI training in Louisiana with LSVI and Affiliated Blind of Louisiana. Teachers and related service providers from four states traveled to Louisiana. Surprising everyone, it was the largest professional development LSVI had held.”

The power of networking

“In the meantime, I met another CVI mom in Louisiana through Facebook, who then gave my phone number to another CVI mom she met at Target, and that mom provided me with the contact information of a TVI who had just been added to the early intervention service matrix for the area. This turned out to be Cindy Champagne — a huge advocate for our kids, a parent of a blind adult, and board member of the National Federation of the Blind’s Parents of Blind Children. These new parents, Cindy, and I would meet for the first time at LSVI’s CVI training in 2018, and after working with our kids, Cindy went on to become the only TVI in Louisiana who completed CVI assessment training at Perkins.

Our informal group of parents, teachers, and related service providers continued to grow on Facebook, and after hearing about Partners in Policymaking from Cheyenne Marcy at the CVI Conference in Omaha, I convinced a handful of these parents to apply. By the end of the Partners session, our CVI contingent of parent- and self-advocates doubled as our classmates learned from us and confided that they or their child also likely had CVI.

We would all learn at Partners that it’s possible to get involved in systems change! Every state has a special education advisory panel (SEAP) for their board of education. Go to those meetings. Start speaking up. At the last SEAP meeting, a teacher came up to me and said, ‘I remember you from a year ago. What you’ve said made me realize that one of my students has CVI.’ I reached one person who helped one kid. It’s like that every time I go to a meeting, whether it’s testifying before the Legislature or the Board of Education.

Parents can also apply to Partners in Policymaking, which most states offer. It teaches both self-advocates and parent advocates of individuals with developmental disabilities how to create systemic change in their state. Each state also has a Developmental Disabilities Council, which comprises self-advocates and parent advocates. Every state also has an advisory council for early intervention, which also should have parents of kids with disabilities on it. After Partners, I was appointed by Governor Edwards to serve on this early intervention council and then served for two years as its chair, seeing to it that more parents of children with CVI joined when I stepped down at the end of 2022.  

There are so many ways to become involved in the system and help to change it.”

On why persistence is worth it

“Meanwhile, I work full-time. I’m a global supply planner for Honeywell. In the first three years of my son’s life, he couldn’t go to daycare due to his medical needs. Grandparents had to help, but by 2020 their help would no longer be possible. Thankfully, through the advocacy of my fellow Partners in Policymaking alumni, Louisiana changed its Medicaid Waiver waiting list to be based on urgent needs, and Louisiana passed TEFRA, also known as the Katie Beckett Waiver, 30 years after it was signed into law by President Reagan. These Waivers allowed us to qualify for secondary Medicaid to cover home nursing, which my private insurance did not cover. Now, Carter goes to school full-time with a nurse, and we have help at home with his medical needs. Without that help, we couldn’t do it.

Seven years after Carter’s CVI diagnosis, the new rules to screen kids for CVI went into effect July 20. First, school districts will focus their efforts on kids coming from early intervention. Then they’ll focus on identifying kids in self-contained classrooms, because according to CVI Scotland, 40 percent of that population has some form of CVI. I’m expecting that, when they’re all done, based on Perkins CVI prevalence numbers, we will quadruple the number of kids being identified with vision impairment in the U.S.

I testified at our Board of Education meeting on the proposed rule and told them: ‘You’re not going to have more kids who qualify for special education, necessarily, because the vast majority of kids with CVI may already qualify for special education through another exceptionality.’ 

Eighty percent of kids with CVI have at least one other disability, but this change will provide them with access to their education. Right now, if vision impairment isn’t recognized, kids don’t receive the accommodations they need. They’re not learning to read; they’re not performing well on standardized tests, which are not designed for students with a brain-based vision impairment.

You’re going to see kids perform better on these tests because they have the accommodations they need — because they’ve been properly evaluated. You’re going to see more kids with a chance to potentially graduate and have the chance to learn job skills, because they’ve now been given access to their education.

I might not see the results immediately for my child. But I’m looking toward the future. At least the next person won’t have to go through this.”

Inspired to make your voice heard? Use Perkins data to amplify CVI and spread awareness in your area.

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