Why Getting Help for Kids with Dyslexia is Difficult

Dayne Guest graduated from high school in 2016. He had been working construction but quit, knowing that wasn't what he wanted do with his life. Today Guest's options are limited because he struggles to read. When he opens a book, he sees "just a whole bunch of words, a whole bunch of letters lined up."

His mom, Pam Guest, knew something wasn't right when Dayne was in kindergarten. "In the mornings when students came into the classroom, they would write that they'd brought their lunch or that they were going to purchase lunch in the cafeteria," she said. "And Dayne always walked right past that board and sat down."

Teachers said Dayne would catch up, but by the end of first grade, he still wasn't reading.

Pam thought her son might have dyslexia. But the teachers said no. It went on like this for years: Pam suspecting Dayne was dyslexic, the schools saying no, and Pam believing them because they were the education experts.

At the end of Dayne's senior year in high school, Pam learned she had a legal right to an evaluation. The school tested him, and the report said Dayne had weaknesses "often seen in students diagnosed with reading disabilities including dyslexia."

"But they would not say that he was dyslexic," said Pam. "And I asked the psychologist why, and she said we would never say that a student is dyslexic. And I said, 'What do you mean?' She said, 'It is not in our realm of professionalism to say that a student is dyslexic.'"

The reluctance to confirm that a child is "dyslexic" goes beyond avoiding a label that could harm kids. Public schools nationwide have long refused to use the word, allowing many of them to avoid providing special education services as required by federal law. According to dozens of interviews with parents, students, researchers, lawyers and teachers across the country, many public schools are not identifying students with dyslexia and are ignoring their needs.

While scientists estimate that between 5 and 12 percent of children in the United States have dyslexia, just 4.5 percent of students in public schools are diagnosed with a "specific learning disability," a category that includes dyslexia and other learning disabilities, according to the National Center for Education Statistics. In addition, while schools routinely screen children for hearing impairment, a problem that occurs much less frequently than dyslexia, screening for dyslexia is rare.

Moreover, most students who are diagnosed with dyslexia aren't identified until at least third grade, according to Dr. Sally Shaywitz, co-director of the Yale Center for Dyslexia & Creativity, and author of Overcoming Dyslexia. She says it is not unusual for dyslexics to go unrecognized until adolescence and beyond, a systemic shortcoming that effectively abandons struggling young readers during the most critical years of learning.

When children are identified with dyslexia, public schools often lack staff with the appropriate training to help, according to several studies and reports.

And yet, there are proven ways to teach people with dyslexia how to read that are not new or controversial. Research suggests that if all children were taught to read using approaches that work for students with dyslexia, reading achievement would improve overall.

According to the most recent federal data, more than 60 percent of fourth-graders in the United States are not proficient readers. Students who struggle to read are more likely to drop out of high school, to end up in the criminal justice system, and to live in poverty.

 

Disagreements Over Reality 

When Billy Gibson, 18, was in elementary school, he couldn't spell his own name. "I would get all the letters backwards," he said. "The worst thing for me was figuring out between lower case 'b' and 'd.' I would always get those mixed up."

He bombed all his spelling tests. He says his teacher would respond by sending him to the hall with the kid who did best on the test. "I remember her saying, like, 'See if you can teach this kid how to spell these words.' The teacher just didn't have the time for me."

Billy says he came to think of himself as the dumb kid who spent a lot of time in the hall. He didn't know he was dyslexic. Neither did his parents.

"We knew something wasn't right," said Billy's mom, Maggie Gibson.

"You can tell things are off, but you don't know specifically what," said Rob, Billy's father.

The Gibsons, from Baltimore County, Maryland, have five kids. All of them have dyslexia. They know, because they paid thousands of dollars for private testing.

But when the Gibsons showed the test results to their children's schools, administrators didn't buy it, says Rob. "The schools essentially said, 'Yeah, we understand this is a test showing abnormalities from a reputed institution that recommends a child with dyslexia have this, that and the other. And, oh, we don't agree with it.' And when we got to that disagreement it was almost like we were disagreeing over reality."

The Gibsons gave APM Reports an audio recording of the meeting where they discussed the test results with staff at their son Eddie's school. In the recording, a staff member says, "We do not suspect a learning disability."

The Gibsons wanted their children to have Individualized Education Plans, or IEPs. Those are the specialized education plans that students with disabilities who are behind in school are entitled to by federal law.

But in the recording, the school staff says Eddie can't have a disability because he has passing grades and average standardized test scores.

More than a dozen families across the country interviewed by APM Reports reported getting into similar fights with their child's school. Parents say their children figure out ways to compensate for their dyslexia and get by in school, but they aren't being taught to read. Children with dyslexia need specialized reading instruction.

But specialized instruction is expensive. The average cost to educate a student in public school is about $12,500, according to the National Center for Education Statistics. The cost to educate a child receiving special education services can be more than twice that. When the federal special education law first went into effect in 1975, Congress committed to covering 40 percent of the extra cost of educating children with disabilities. But the federal government is only covering slightly more than 15 percent. States and local districts pay for the rest.

That's one reason schools have avoided using the word dyslexia, according to Fran Bowman, a former special education teacher who now runs an educational services company that works with school districts to train teachers. "They would say, 'We don't use the word dyslexia.' Because once you open Pandora's box, you have to serve those children."

In other words, if schools acknowledge a student has dyslexia, they may be legally obligated to provide special education.

Six special education directors from around the country interviewed by APM Reports denied their schools were refusing to use the word dyslexia to keep students out of special ed.

Kevin Gorman, director of special education in Upper Arlington, Ohio, and a former school principal in another Ohio district, said schools were avoiding the word because it wasn't a term used by the state on IEP forms. Instead, the state used the umbrella term "specific learning disability." Gorman explained that schools are so concerned about adhering to the letter of the law that they are reluctant to use terms that do not appear on official paperwork.

Avoiding the word was such a problem in schools across the country that in 2015 the U.S. Department of Education issued a special letter reminding schools that not only can they use the word dyslexia, they should use the word if it can help them tailor an appropriate education plan for a student.

It's a legal requirement for schools to identify all children who have disabilities and provide them an "appropriate" education. But many schools have resisted the approaches to reading instruction that students with dyslexia need — and that would help all children read better — because of a long-running dispute about how to teach children to read.

The reading wars

You can trace the debate in the United States about how to teach kids to read all the way back to Horace Mann, the father of the public schools movement. In the 1800s, Mann railed against the idea of teaching kids that letters represent sounds. He believed children would better understand what they were reading if they first learned to read whole words.

This came to be known as the "whole language" approach. On the other side of the debate are people who say children must be explicitly taught how sounds correlate with letters. This is commonly referred to as the "phonics" approach.

The argument over which approach is best has been intense and political, with phonics cast as a traditional, conservative approach. Think of children sitting in front of a blackboard, sounding out words as a teacher points to the letters that represent each sound.

Whole language, on the other hand, holds that learning to read is a natural process and that kids don't need explicit instruction. Expose them to lots of good books and they will learn to read. That approach is seen as the more liberal, progressive way.

As with many ideas in education, there have been big pendulum shifts over the decades. Whole language was big in the 1920s, for example, as progressive education became influential. The pendulum swung back toward phonics in the 1960s. By the 1980s, whole language was popular again.

Bowman, the former special education teacher, got extensive training in phonics in the 1970s and used that approach early in her teaching career. But she says she soon got a supervisor who told her she wasn't allowed to teach phonics. "You should be teaching by the entire word, instead of these little sounds," she recalls the supervisor telling her.

Bowman says it's easier to train teachers to use the whole language method than to train them to use phonics. She thinks that's one reason whole language has been so attractive. "School districts were like 'Wow! We can just give you a bunch of books!'"

Proponents of whole language say the approach is more than that. They promote a set of strategies that emphasize comprehension, engagement, and helping children to develop a love of literature.

But by the late 1990s, there was rising panic in the United States that too many kids were not reading well. Scores on the National Assessment for Educational Progress showed most students were not reading proficiently.

In 1997, Congress called for a National Reading Panel to determine how best to teach reading. It reviewed more than 100,000 studies and in 2000, the panel published a 449-page report that was a crushing blow to the whole language movement. There was no evidence to show whole language worked and lots of evidence that teaching children the relationship among sounds, letters and spelling patterns improves reading achievement.

This is for all kids, not just those with dyslexia.

Andrea Rowson was teaching in a public school in Ohio when the report was released, but she says she didn't learn about the findings until years later. "What happens in public education is a lot of initiatives come through, a lot of information gets thrown at schools. New regulations, new this, new that," she said. "And I think it was just one of those things where (schools) said 'OK' and didn't really realize how huge it was."

In 2012 when the public schools in Baltimore County refused to give the Gibson children IEPs, Rob and Maggie decided to hire a lawyer. "All we wanted was to secure their right to learn in public school," said Maggie.

Their son Billy was in middle school and struggling. "It just got so overwhelming," he said. "I would just constantly have these anxiety attacks and it got to a point where I refused to go to school."

Trying to get him the help he needed for his dyslexia was turning into a long and contentious process. Maggie and Rob felt that for Billy and his older sister, time was running out. They decided to send them to the Jemicy School, a private school for students with language-based learning differences in Owings Mills, Maryland.

Jemicy has about 380 students in grades one through 12. The hallways are covered in student artwork and there's a woodworking shop where students can take geometry. For students who struggle with written language, learning by doing is especially helpful.

Class sizes at Jemicy are capped at 12. The school also provides intensive reading remediation in small-group tutoring sessions.

In a recent tutoring session, Josie and Christopher — fifth-graders in their first year at Jemicy — were seated at a table with a teacher. They were working on the letter combination double vowel "oo."

"What are the two sounds that 'oo' make?" the teacher asked.

Christopher responded confidently with the long vowel sound that "oo" makes in the word "school." But there's another sound "oo" makes. Josie and Christopher didn't catch on.

"'Uh' as in 'book,'" said the teacher.

This tutoring is based on an approach known as Orton-Gillingham, named after Samuel Orton and Anna Gillingham, early 20th century pioneers in dyslexia research and remediation. They figured out that children with dyslexia struggle to understand how sounds and letters correspond. To teach them to read, they need to be explicitly taught the rules of the way written language works. Orton and Gillingham developed a systematic approach for doing this. Their ideas form the basis for a number of effective instructional approaches in use today.

When Billy Gibson started at Jemicy as a ninth grader, he wasn't sure he would finish high school. His dream was to be an artist, but his middle school art teacher gave him C's because he didn't follow written directions. Billy went into Jemicy thinking, "I'm not going to be anything. I don't have any dreams."

But Jemicy's small classes and intensive reading instruction helped him catch up and gave him confidence he'd never felt in school. On his first day, he says an art teacher noticed him doodling and told him she thought he could be a great artist. "You should take my class," Billy remembers her saying to him. "I won't give up on you."

Billy graduated from Jemicy in 2017. He's now studying 3D computer animation at the Ringling College of Art and Design in Sarasota, Florida. His goal is to work in the film industry. "Hopefully someday you'll be in the movie theater and see my name on the credits of the big screen," he said.

More than $60,000 a year

Billy's mom Maggie noticed a difference at Jemicy right away. As the parent of kids with dyslexia in public school, she says you get used to being in fight mode. "You're fighting for it to be recognized that your kid needs X, Y and Z," she said. "And then you go into Jemicy and you have a teacher conference and the teachers sit down and say, 'You know, we think your child would benefit from this, this and this. And we notice that your child needs' — whatever it is. And you're like, 'Oh my gosh! We're speaking the same language. We're all noticing the same thing.'"

But to send two kids to Jemicy cost more than $60,000 a year. Maggie and Rob are fortunate: He's a physician and they got financial help from their children's grandparents. But five private school tuitions weren't in their budget. So, with their lawyer, the Gibsons kept fighting with the Baltimore County Public Schools to try to get their three other kids better help.

The Gibsons eventually got the school system to pay for two of their children to go to Baltimore Lab School, a private school for students with learning disabilities. The Gibsons don't think they would have gotten that if they hadn't hired an attorney. Getting what you need for a kid with dyslexia is a rich man's game, says Maggie. The Gibsons estimate their family has spent more than $350,000 — including legal fees, private tutoring and tuition — to get their five dyslexic kids what they needed to be successful in school.

Without help from grandparents, Maggie says she and Rob probably couldn't have made private school work. "What does a person do that doesn't have the luxury of other people to help them?" she said. "What do you do?"

Pam Guest, for example, did not have the financial means to send her son Dayne to private school. "I talk to a lot of upper-class white families who were able to take their kids out and send them to private school. Those kids are doing well now, and they're able to go to college," she said. "And we didn't have that opportunity."

Dayne went to the Baltimore County Public Schools, too. There's no evidence that Baltimore County has more of a problem than other public school systems when it comes to identifying and providing proper instruction to students with dyslexia. But officials with the Baltimore County Schools are now admitting they have a problem. "We need to do better," said Rebecca Rider, who's been director of special education for the Baltimore County Public Schools since 2014. Under her leadership, the school system has begun to train teachers in Orton-Gillingham. Before this effort began in 2016, the county schools did not have anyone trained to provide this instruction.

Stephen Cowles, a lawyer for BCPS, said the school system is making more of an effort to identify students with dyslexia. As a result, he says the county is paying for more students to go to private schools. In the 2016 fiscal year, the county paid nearly $40 million dollars for students with disabilities who could not be appropriately served in public schools to go to specialized private schools. BCPS couldn't say how much of that money is being spent on students with dyslexia.

But helping students with dyslexia is not just about expanding special education services. Research suggests that if students with dyslexia got effective early reading instruction in their regular classrooms, some of them may not need intensive, specialized instruction. The problem is that many teachers do not know how to teach reading effectively.

Thousands of teacher preparation programs

In 2000, the National Reading Panel identified five key components of effective reading instruction. Ten years later, the U.S. Department of Education decided to find out whether people coming out of teacher preparation programs had learned those five components.

New teachers could correctly answer only about half the questions on a multiple-choice test. They rated their own preparation in how to teach reading as below "moderate."

In 2016, the National Council on Teacher Quality, a think tank in Washington, D.C., analyzed syllabi from undergraduate elementary teacher preparation programs and found that fewer than 40 percent covered all the components of effective reading instruction. And that was a big improvement from 2014 when NCTQ found just 17 percent of teacher preparation programs taught all five components.

What are teachers learning about how to teach children to read?

"We learned a lot about creating a literature-rich environment," said Rowson, the Ohio teacher. She got her initial training in the 1980s and says she learned nothing about phonics; in fact, she says her professors were against the idea of explicitly teaching children the relationship between sounds and letters. She learned the whole language approach.

Rowson says she didn't learn how to teach children to read until she was trained in Orton-Gillingham. She now trains teachers in Upper Arlington, Ohio, a school district that has significantly changed how it teaches reading in response to a formal complaint filed by a group of parents.

Amelia Smith, a teacher in Upper Arlington who got her degree in elementary and special education in 2012, says by then there was recognition that phonics was important. "We knew what it was but we weren't taught how to teach it," she said.

One reason teachers are not being better prepared to teach reading is there's still an ideological fight going on about whole language versus phonics, according to Jule McCombes-Tolis, chief academic officer for educator training initiatives at the International Dyslexia Association. She spent more than two decades as a professor in teacher preparation programs. "The division in higher ed in reading is alive and well," she said.

McCombes-Tolis says in the wake of the National Reading Panel report, many teacher educators who believed in the whole language approach promoted the idea of "balanced literacy" instead.

But balanced literacy is basically whole language with some phonics mixed in, says Tim Shanahan, a literacy expert who served on the National Reading Panel. "Balanced literacy began as the notion of a different attempt to try to settle the reading wars. It's supposed to be the best of both worlds."

Shanahan says what's wrong with balanced literacy is that it combines a whole bunch of things that don't work with a little bit of what does work, and that's not good reading instruction. He thinks a big problem with teacher preparation programs is that many of the people who are teaching the reading instruction courses don't know the science of reading that well.

"The folks who teach these courses range in their knowledge dramatically," he said. Enroll in a teacher preparation program and your instructor might have a Ph.D. and be familiar with the latest research, says Shanahan. But "you could have somebody who — this person teaches four other things for us and we'll give them an extra course in reading instruction. They have last year's syllabus and they do their best," he said.

There are thousands of teacher preparation programs in the United States and there's very little oversight of them. In higher education, the faculty typically controls the curriculum. There is no one authority to hold accountable for how teachers in America are trained.

States do have some power and many are trying to exert more control over what gets taught in teacher preparation programs as well as what is happening in public schools when it comes to students with dyslexia.

As of October, 41 states have some sort of dyslexia law, regulation or resolution. The laws and regulations vary widely. Some require graduates of teacher preparation programs to pass science of reading tests; others encourage public schools to provide teacher training on how to identify dyslexia.

Most of these laws have passed in the past few years partly due to parent advocacy groups pushing for change.

Pam Guest is a leader of one of these groups, Decoding Dyslexia-Maryland. Decoding Dyslexia has chapters in all 50 states. In Maryland, the group succeeded in getting a bill through the legislature to establish a task force that reviewed how students in the state are identified and treated for dyslexia. Now the group wants funding for a pilot program to demonstrate best practices when it comes to not only helping students with dyslexia, but to teaching all children how to read.

Even though it's too late for her son, Guest says she's determined to change things so what happened to Dayne won't happen to other kids.

"It's simple," she said. "Teachers must be able to teach children how to read."

Emily Hanford is senior education correspondent for APM Reports, the documentary and investigative journalism group at American Public Media. The fall season of four education documentaries can be heard via the Educate podcast. Subscribe now on Apple Podcasts.