Transforming Care for Children with Learning Disabilities
Ava is working with specialists to improve her reading skills, and her family hopes more treatment options will become available as Cincinnati Children’s advances its research.
As a toddler, Ava was energetic, curious and clever. She loved figuring out the world and, by 5 years old, she was eager to begin school. Her mom, Gina, expected her to thrive, but to her surprise, Ava found school difficult.
While Ava excelled in most subjects – particularly math – she struggled with reading, stumbling over even the simplest words. Reading with Ava became a painful experience, as it seemed no matter how much she tried, she just couldn’t grasp it.
“I reached out to Ava’s teachers and asked them what they thought about her struggles with reading,” Gina recalls. They all told me that reading would just click one day and she’d be fine. But I knew something else was going on.”
At home, Gina worked with Ava to practice her letters and reading. Ava could recognize simple words on flash cards, but could not recognize the words when they were put into a sentence. “What was really heartbreaking was to see her work so hard, only to end up lagging behind her classmates.”
Gina decided it was time to do more. After months on a waiting list for testing at another care provider, Ava was able to see a learning disorders specialist who diagnosed her with dyslexia. A light went on for Gina. “Her struggles made so much more sense. And now, we had a diagnosis and could get her the kind of help she needed.” But finding that help wasn’t as easy as Gina and Ava had hoped.
Ava is one of about 2.4 million children in the United States who struggles with a learning disorder. Dyslexia is the most common, affecting 5 percent to 12 percent of children. But even dyslexia itself is a broad category, as reading difficulties manifest in different ways from child to child.
Despite the importance of literacy to success in daily life, dyslexia currently is treated as a learning problem, rather than a medical disorder. This means that therapies and interventions aren’t covered by insurance or even readily available through doctors or medical centers – forcing parents to seek help from already overburdened school systems.
Experts at Cincinnati Children’s aim to help families, like Ava’s, by transforming the way learning disabilities are diagnosed and treated.
Passion Fuels Progress
When you meet Tzipi Horowitz-Kraus, PhD, her energy and enthusiasm for learning more about reading difficulties is palpable. She is leading a study that aims to break down reading disabilities, including dyslexia, into their underlying origins. This approach has the potential to transform how we help kids like Ava.
Using functional magnetic resonance imaging (fMRI), eye tracking and behavioral testing, Horowitz-Kraus is developing a complete picture of what the brain needs to do to allow a child to read fluently.
Her research compares brain maps from children who read well to those who have been diagnosed with reading disorders. She’s also looking at differences in brain activity before and after reading interventions. This approach can teach us which methods are going to work best to help children with reading difficulties learn to read most effectively.
“This research is so important,” says Horowitz-Kraus. “It’s not just to discover where in the brain reading difficulties happen. The big picture is to establish a more accurate and quicker way to diagnose problems and show which interventions help which kids.”
Horowitz-Kraus and others are also working to provide evidence that reading and learning disorders are medical problems with underlying neurological causes, rather than educational problems. If the underlying causes of reading disorders are biological, interventions should be covered by insurance. That means that kids with reading or learning disorders could more easily access tailored, specific treatment with interventions at a medical center with licensed therapists.
Partnership Matters
Horowitz-Kraus and her colleague Scott Holland, PhD, director, Pediatric Neuro-imaging Research Consortium, were able to begin this work because of the generosity of donors like Mary Lou Tecklenburg.
Tecklenburg has always been passionate about reading and literacy – especially when it comes to kids. She was a key donor in establishing the Reach Out and Read program at Cincinnati Children’s, which supplies books to families and encourages parents to read to their children. She was so impressed with how Cincinnati Children’s grew the program that she wanted to do more.
“It’s incredible to me how much the Reach Out and Read program has grown,” says Mrs. Tecklenburg. “It has inspired me to continue my partnership with Cincinnati Children’s to help make an even stronger impact.”
Mrs. Tecklenburg made a gift to the medical center which established an endowed chair for pediatric literacy. This endowed chair was the seed that enabled experts like Holland, who currently holds the Tecklenburg Chair for Pediatric Literacy, and Horowitz-Kraus to advance literacy outreach and research.
Moreover, her gift helped inspire other donors to invest in literacy and reading research projects at Cincinnati Children’s. Partnerships with friends like Tecklenburg have helped put in place a new screening program at Cincinnati Children’s, evaluating children for reading problems. The hope is that a treatment program for children with reading difficulties will soon follow.
“What’s really amazing about this research is that it’s happening at all,” Horowitz-Kraus pauses. “Studying reading disorders is not typically done in a medical environment. We wouldn’t be able to do this without philanthropic partnerships.”
Big Ideas, Big Impact
Currently in the United States, research and clinical care for reading difficulties and literacy outreach are typically handled by several different organizations. But Holland, Horowitz-Kraus and their colleagues in the departments of Pediatrics and Speech-Language Pathology at Cincinnati Children’s are teaming together for a more holistic approach.
They are putting the contributions of their supporters to work to create the Reading and Literacy Discovery Center (RLDC). This new center, housed at Cincinnati Children’s, will approach reading difficulties from all sides and will put modern research into practice using treatments that are proven to work for reading problems based on scientific evidence and proven outcomes.
“The RLDC will be where a child who’s having difficulties in reading can come for evaluation, get a treatment plan, therapy and follow-up care,” says Holland. “We’ll also have literacy programs and outreach for the community that includes training educators to help students in school and encouraging parents to read with their children.”
Horowitz-Kraus smiles at this thought. “Helping to create a center like the RLDC wasn’t something I planned on when I came to Cincinnati Children’s in 2011. Now, it’s three years later, and I’m a part of creating something that will really make a difference in Cincinnati and around the world, and that’s so exciting.”
Looking to the Future
While well on its way, the RLDC is not yet a fully operational center – it still depends on developing partnerships to make it a reality. And it can’t come soon enough for kids like Ava.
“It’s been hard to find help for Ava,” says Gina. “We’re lucky that she’s so willing to learn, and we’ve been able to find ways to help her. But, having one central place to go for help would be a dream come true. The RLDC would help so many kids like Ava have better futures.”
