Parents push for more screening, support for students with dyslexia

Lori Smith wonders what life would be like for her daughter if she’d been screened for dyslexia in kindergarten instead of in the third grade.Now a fourth-grader at Moore Magnet STEM Elementary School in Clarksville, Ryann is bright and creative. She loves drawing and musical theater. But she’s also reading below grade level. Her mom believes that, if Ryann had been diagnosed sooner with dyslexia, a learning disability that affects how a person processes written words, she could have received the supports she needed right away.

“We would have a totally different experience,” Smith said. “She wouldn’t be behind right now.”

Smith and a coalition for parents across the state are pushing for a bill that would require early screening for dyslexia, which affects up to one in five children.

The bill is scheduled to considered in House and Senate education committees on Tuesday and Wednesday after passing unanimously earlier this month in a House subcommittee — unusual for a bill with a fiscal note of more than $1 million.

Students with dyslexia have difficulty recognizing words and sounds and spelling, but can learn how to read with a specific multisensory approach that combines touch, sound and sight.

But because there’s no screening process in Tennessee public schools, the disability often goes undiagnosed and untreated. Even when it is diagnosed, schools often don’t have the proper training or tools to address the disorder, resulting in kids getting inappropriate interventions that do more harm than good.

According to the Yale Dyslexia Center, the earlier dyslexia is identified, the better. Dyslexia can be identified before a student even enters school, preventing children from getting far behind, discouraged and disengaged. Dyslexia also has been linked with higher rates of high school dropouts and even imprisonment and suicide.

Such concerns inspired Smith to get in touch with Rep. Joe Pitts, her local representative.

“I told Rep. Pitts, ‘I can make sure my child can get the help she needs. But when you’re talking about one in five students are struggling with this — who is advocating for other kids, whose parents can’t read or can’t recognize that their child is struggling?’”

With the help of Professional Educators of Tennessee and other parents involved in Tennessee’s chapter of Decoding Dyslexia, Pitts drafted the proposal to help more Tennessee students with the disability get the help they need.

Despite the prevalence of dyslexia in schools, the Tennessee Department of Education didn’t recognize it as a learning disability until 2014, when the legislature passed the “Dyslexia is Real” bill, mandating that dyslexia be covered in teacher training each year.

The federal Office of Special Education Programs then specified to states that dyslexia can, and should, be accounted for in students’ Individualized Education Plans, or IEPs, which dictate what kind of supports they receive in class and during testing.

But that only helps if your student has been identified with dyslexia in the first place.

Ryann’s letter to Gov. Bill Haslam includes many b and d reversals because of her dyslexia. (Provided by Lori Smith)

Lori Smith and her husband Shane struggled to have Ryann screened because, although she was below grade level in reading, she typically performed average on the state’s “Response to Intervention,” or RTI screeners, which are meant to single out struggling students in order to provide them with help. They knew Ryann couldn’t recognize that words like “hat” and “cat” rhymed and that she mixed up sounds, but teachers waved off concerns. The Smiths were repeatedly told not to compare Ryann to her older brother, a gifted reader. Finally, they had Ryann privately tested, and found what they had suspected all along: she has a learning disability.

Meanwhile, in Nashville, the Thorsen family was having an almost identical experience. Like Ryann, Clara Thorsen is a gifted student who loves books and art. But she was beginning to hate school because of her struggle to read. School officials told Clara’s parents that they couldn’t screen Clara for dyslexia until she had failed RTI screeners several weeks in a row.

Fortunately, both of Clara’s parents are attorneys familiar with federal law. And Clara’s mom, Anna, also has dyslexia. They provided a letter from the U.S. Department of Education prohibiting states from using RTI to delay screening for a disability.

"If you have a parent who doesn’t know they have a right to do any of this, you’re completely screwed."

Anna Thorsen, parent

“We were in some ways uniquely prepared for the battle that was about to ensue,” said Anna Thorsen. “If you have a parent who doesn’t know they have a right to do any of this, you’re completely screwed.”

Even once a student is diagnosed, schools might not have the resources, such as audio books or multisensory curriculums, that can help kids learn to read. Julya Johnson, co-founder of Tennessee’s Decoding Dyslexia, remembers feeling at a loss when her son David was diagnosed with dyslexia, but his school didn’t have a program aimed toward learners like him, rendering his intervention time unproductive.

“I finally got him identified, he’s being pulled out of class, and it’s for something that can’t help him,” she recalls.

Johnson had to research and advocate for change at the district level before her son was finally placed in a dyslexia-specific program.  Parents of students with dyslexia say teachers need training about dyslexia, kids need better screeners, and schools need to provide a multisensory curriculum.

“It’s more than my child’s school,” Smith said. “It’s truly a statewide issue.”

Ryann and Clara have written to Gov. Bill Haslam and Education Commissioner Candice McQueen to ask for more support for students like them. Ryann also testified to a House subcommittee, urging them to pass Pitts’ bill, which requires the proper interventions for dyslexia and creates an advisory council, as well as mandates screening for kindergarten through second-graders.

“I did not know why reading was so hard,” Ryann told lawmakers. “I did not think I was smart. … I would come home crying and ask my mom, ‘Why is reading so hard? I love books!’”

Ryann told the panel that things are looking up for her now that she has a diagnosis, but she wants to help more kids.

“This bill is important because most kids don’t have the money to be tested,” she said.