Max Matheny, 13, wore his Sacramento duds – black suit paired with a lime shirt, topped with a newsboy cap – up to the Capitol five times this year, carrying a wrinkled copy of his speech in a book bag. “I’m really smart, with an IQ higher than average,” he told the state Senate Education Committee last summer. This was hard-won self-knowledge, the farthest thing from 8th-grade braggadocio.
“Up until this past January, I read at a 2nd-grade level,” he told the senators.
Max has dyslexia, a reading disability thought to originate in the neurological structure of the brain. The words “smart” and “special education” aren’t spoken together often by educators, but Max, perched on a swivel chair before a microphone, did just that with the legislators. He told them he was smart, he had not received the correct instruction for dyslexia in seven years of special education and he wanted the legislators to do something about it.
“I’m really smart,” said Max Matheny, 13, a student with dyslexia.
They did. This month, Gov. Jerry Brown signed into law Assembly Bill 1369, authored by Assemblyman Jim Frazier, D-Oakley. The new law requires schools to assess struggling readers specifically for dyslexia, the most prevalent learning disability in the U.S. and a disorder that affects as many as 80 percent of California students with learning disabilities in special education, according to Kathy Futterman, a supervisor in educational psychology and teacher education at California State University East Bay.
In addition, the law requires the California Department of Education, by the start of the 2017-18 school year, to post information on its website to help teachers find a proven, evidence-based approach for teaching reading to students with dyslexia. Such approaches, which include Orton-Gillingham and Wilson Language Training, involve direct instruction in breaking the “code” of letters and sounds. The law does not include two requirements initially sought by the grassroots organization that sponsored the legislation, Decoding Dyslexia California: that districts be required to use the tools posted on the California Department of Education website and that students in K-3 be screened for dyslexia.
Proponents of the law describe a dire situation in school for students with dyslexia, a condition that is so commonly conflated with low intelligence by teachers and parents that advocates have a ready list of impressive individuals who are dyslexic, including Lt. Gov. Gavin Newsom, Supreme Court litigator David Boies and Nobel Prize winner Carol Greider.
Among the most baffling experiences for students with dyslexia, according to Decoding Dyslexia California, is that many school staff tell parents there is no such thing as dyslexia or that dyslexia is not a disability. Some districts refuse to say the word at all.
“I was told, ‘We do not use the word dyslexia,'” said Holly Snyder, a member of Decoding Dyslexia California and a Sacramento-area parent whose 9-year-old son Ty has dyslexia.
“I think most school psychologists prefer the term ‘specific learning disability,'” said Barbara D’Incau, a past president of the California Association of School Psychologists. “Although we have been reluctant to use the word dyslexia, it’s clearly in common usage and you’re going to see teachers and school psychologists use it much more.”
The avoidance of the word has become such an issue that the federal Office of Special Education and Rehabilitation released a “Dear Colleague” guidance letter on Oct. 23 encouraging state offices of education and local school districts to ensure that their policies don’t prohibit the use of “dyslexia.”
— Understood (@UnderstoodOrg) October 23, 2015
The letter followed a tweet earlier this month, which is Dyslexia Awareness Month, from U.S. Secretary of Education Arne Duncan:
It’s okay to say dyslexia! Schools must identify and meet the unique/individual needs of any child with a disability http://t.co/yf7TUo2gFW
— Arne Duncan (@arneduncan) October 5, 2015
Dyslexia “is still not recognized by most public schools,” said the Southern California Tri-Counties Branch of the International Dyslexia Association in a statement in support of the law. This is true, the group noted, even though dyslexia has been included in the California Education Code since 1990 and is included as a “specific learning disability” in the federal Individuals with Disabilities Education Act.
“This is educational malpractice,” Snyder told the Assembly Education Committee earlier this year. “We know how to treat this.”
She added in an interview, “The ironic twist in this whole story is that I’m a kindergarten teacher and I didn’t know what dyslexia was. There’s no teacher training, no classes.”
As a result, with many schools not looking for signs of dyslexia or providing evidence-based interventions, parents of struggling readers are left floundering, said Riverside-area parent Jennifer Biang, who founded Decoding Dyslexia California in 2013. But now they are mobilizing, Biang said. Since 2011, when the original Decoding Dyslexia group was founded in New Jersey, the organization has become a national network with chapters in all 50 states.
Biang says she fields calls from parents who are all but resigned to their child’s academic failure because of dyslexia. “I explain to them that dyslexia is not a cognitive disability,” Biang said. Let the school handle it, they say. “No services, no understanding of dyslexia” is how Biang describes the three school districts her daughter, Violet, 16, who has dyslexia, has attended. Biang explains to these parents that they are probably going to have to get involved.
The law was opposed by the Special Education Local Plan Area (SELPA) Administrators of California, an organization of leaders of regional agencies that oversee special education in the state, and the California Association of School Psychologists. In an apparent misstep, the special education administrators group released a statement that it opposed the bill in part because it was inappropriate to screen students for letter reversals – writing the letter “b” instead of “d” – before 3rd grade.
But screening for letter reversals is not how students are identified as dyslexic, said Kelli Sandman-Hurley, a co-founder of the San Diego-based Dyslexia Training Institute, who supported the bill. “Dyslexia is not seeing things backwards,” she said. “What was fascinating is they even put that in writing. I thought, ‘You just explained to the whole state how much we need this law.'”
The legislation will require schools that are testing struggling readers to test students’ “phonological processing,” which is the ability to discriminate and manipulate sounds at the sentence, word, syllable and individual sound level. A difficulty in phonological processing is a defining characteristic of dyslexia, according to the International Dyslexia Association, but a trait school psychologists often aren’t testing for, according to Futterman at Cal State East Bay. “My opinion is that people are not well versed, well trained or well educated in language-based learning disabilities,” Futterman said. “They are not able to do a differential diagnosis.”
Most teachers, including those in special education, aren’t taught to use evidenced-based reading interventions, according to the National Council on Teacher Quality, a nonpartisan research group in Washington, D.C. The council looked at 64 programs in California that prepare elementary school teachers and found that more than half did not cover the science of reading – how the brain processes information to decode sounds and words, said Sandi Jacobs, senior vice president of state and district policy for the council.
And while the California Association of School Psychologists opposed the law on the grounds that “phonological processing” assessments were already allowed, and that the law needed to clearly state that school psychologists would conduct the assessments as usual, the organization is now advocating for improved services for students with dyslexia.
D’Incau said the group is preparing a position paper with recommendations for the California Department of Education. These include identifying students in grades K-2 who have the characteristics of dyslexia and providing early interventions. In addition, the psychologists will recommend that the California Commission on Teacher Credentialing improve educator and school psychologist training in how to address dyslexia, she said.
Max, who lives in Aptos, finally is receiving an intervention designed for dyslexic students. In the first four months of the program, his reading level jumped from 2nd grade to the mid-year of 3rd grade. “I’m glad they are teaching me now,” Max told the legislators. “I had given up hope before. I just thought I was too stupid to learn how to read.”