*Clarification appended

When Katharine Margiotta and her family go out to eat, she has to read restaurant menus to her 13-year-old son, who struggles to write letters of the alphabet and guesses most words in his reading assignments.

Any teacher should immediately realize he has dyslexia, the most common learning disability, she said. Yet she's been fighting for years to get Austin ISD to provide high-quality services to help her son learn to read. Now her son is in seventh grade — much older than the age studies say intensive reading instruction is likely to help remediate the disorder — and extremely frustrated with battling his way through classes.

"Even with the best case scenario, if he got exactly what he needs right now, he's going to be different than he could have been," she said. "He used to want to be an engineer. Now, he sometimes tells me this is his last year of school.”

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For years, Margiotta has been fighting to connect her son with the qualified teachers and dyslexia-specific programs he needs to read at the same level as his peers. A self-employed real estate broker, she said she is not able to work full-time because of the considerable demands of advocating for her son.

She’s had to learn an overly complex educational system that forces countless parents to become legal and policy experts and hold educators accountable for following federal law in a state that hasn’t invested in properly training teachers or setting consistent standards for helping dyslexic students.

After a 15-month investigation, the U.S. Department of Education found in January that Texas had effectively capped federally-funded special education services for at least a decade, denying thousands of kids with disabilities the tools and assistance they need to learn. The report said the ambiguity in the state's policy on dyslexia may have directed some eligible students away from federally-funded special education services, violating federal law.

The Texas Education Agency rolled out a preliminary plan last month that would revise state policy on dyslexia so Texas could get back in compliance with the federal Individuals with Disabilities Education Act, or IDEA. In 1985, Texas became the first state to pass a law requiring school districts to screen and treat students with dyslexia, back when federal law didn't address the scores of kids with mild to moderate dyslexia falling through the cracks. So what happened in the last three decades?

Many parents and advocates argue that Texas has not updated its guidelines for schools to reflect recent, more progressive federal policy around how to best serve kids with learning disabilities such as dyslexia. But more importantly, they say, school districts lack the funding, knowledge and qualified staff necessary to target struggling learners in both special and general education when they're young and haven't yet given up on reading.

“It’s my opinion that if teachers really really understood, they would be making changes [in the way they teach students with dyslexia] on their own,” said Marilyn Hagle, a former teacher and parent of two kids with dyslexia. “The understanding isn’t there.”

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History influences current policy

Back in the 1980s, federal law provided no guidance for how to help students with mild to moderate dyslexia, leaving those students to fend for themselves in the education system.

Geraldine “Tincy” Miller, a State Board of Education member representing part of North Texas, advocated for the first state dyslexia law in the nation in 1985, mandating students at all grade levels get screened and treated for dyslexia.

Miller’s son had a form of dyslexia that affected his ability to learn to write. But he wasn’t diagnosed until he was 19, much too late for the school system to help him.

“The regular education, mild to moderate children, have historically not been served and fell through the cracks and none were identified,” she said. “Our law in 1985 was specifically designated for kids who were left in the regular classroom.”

But it was, and still is, an unfunded mandate. The state never provided money for the new services, forcing districts to find the money in their own budgets.

In 1992, Miller led the charge to create the first state dyslexia handbook, most recently updated in 2014, providing educators and parents with an overview of state and federal requirements for kids with dyslexia. But Miller said parents still call her in tears because schools aren’t identifying their children as dyslexic and offering help.

“It shocks me that after all these years … that [schools] would still want to misinterpret the law,” she said.

The confusion around dyslexia isn't a problem isolated to Texas. In 2015, the U.S. Department of Education issued guidance reminding states that students with dyslexia are eligible for federally-funded services.

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At a recent hearing at the State Board of Education, Miller agreed with parents and advocates who testified that if the state handbook’s guidance was unclear, it should be corrected immediately. The board plans to revise the handbook by summer.

But she said the Texas Education Agency’s plan to monitor and correct how schools are serving students is unrealistic without a long-term plan for funding it. Last year, lawmakers failed to pass a bill that would have provided schools with extra money for each child diagnosed with dyslexia.

”When you don’t have money identified per child … it isn’t going anywhere, I’m sorry,” Miller said.

Ultimately, Miller said, parents have to serve as a consistent force for holding their schools accountable. “It will go somewhere if parents in that school district get together, like a [parent teacher association]. They have more influence than they can ever, ever imagine.”

Section 504 vs. special ed

Margiotta first noticed her son’s trouble with words in pre-K, when other kids began to read and write their first letters and he could not — the start of a years-long battle.

When she asked school officials to test him for dyslexia in kindergarten, she was told they didn’t generally test students until second grade — a policy that violates state and federal law. Ultimately, his symptoms were so severe that school officials tested him in the middle of first grade and diagnosed him with dyslexia, then decided to keep him in general education.

But the school’s reading specialist could not fit him into her schedule, and he failed to make progress in second grade, Margiotta said.

“He was dramatically behind his peers,” she said. Finally, she successfully pushed district officials to evaluate him for special education at the end of third grade, and they worked together to create an individualized plan to help him catch up. She said she had no idea he might have been eligible for special education for his dyslexia in kindergarten.

Federal special education law lists dyslexia as an example of a "specific learning disability," one of a dozen disability categories it covers. Students may be eligible for federally-funded services if they lack reading comprehension skills or the basic ability to read.

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The law requires schools to evaluate students for special education when teachers or parents suspect they may have a learning disability that warrants the additional services.

Students with varying levels of dyslexia are eligible for special education and can receive services and tools to access the curriculum, such as voice dictation technology or help from an aide. They can receive that help in regular classes or in separate special education classes, and their parents are guaranteed certain legal rights to collaborate on the school’s decisions.

Many Texas educators told federal investigators they interpreted state policy to mean that students couldn’t qualify for special education unless they had a second disability along with dyslexia. But that interpretation of policy violates federal law, the January federal report says.

Many educators lack training to know when they should refer struggling learners to special education. A student with dyslexia could be directed through drastically different plans of action depending on his or her individual district, school or even teacher.

The result: Most Texas students with dyslexia don’t get the more-intensive services provided under federal law, including some students who may need them. About 141,000 Texas students in 2015-16 received services for dyslexia, but just 20 percent of those students received federally-funded special education, according to the federal monitoring report.

The other 80 percent of students with dyslexia receive services in regular classrooms through a broader federal civil rights provision called "Section 504," which comes with no state or federal funding and few requirements for parental input or consent.

“I saw the way that schools were funneling parents into 504 plans for dyslexia, basically allowing them to offer whatever they deemed they were going to offer for dyslexia,” said Robbi Cooper, a parent-turned-advocate who leads the state chapter of advocacy group Decoding Dyslexia. “There was no parental involvement, unless it was given lip service.”

The state’s general education dyslexia program is intended to give students with mild to moderate dyslexia targeted instruction so they can make academic progress.

This year, 61 percent of Austin ISD students with dyslexia are in the state's general education dyslexia program, said Jean Bahney, the district’s special education director. The district has trained 200 teachers to recognize and help kids with dyslexia and has 67 certified academic language therapists, each serving one campus, who work primarily in general education classes, she said.

But not every district invests those kinds of resources into its general education programs. Texas does not regulate who is allowed to teach students with dyslexia, or what reading programs they should use, leaving those decisions up to individual districts and schools.

Stephen Yearout, a parent of two sons with dyslexia, said he had to wait three weeks to get his son small-group intensive reading instruction in Garland ISD's general education dyslexia program because the district didn't have enough staff. Some of the programs available are taught by support staff, not certified reading specialists.

“How are you going to take a child that needs somebody that is highly educated on language and reading and give them a teacher’s aide?” Yearout said.

'I can't believe I'm still fighting'

Despite advocates’ push to get federally-funded services for more students who need them, some say special education does not guarantee a good education for students with dyslexia because many schools don’t have properly trained staff.

Many experts say how students are being taught matters more than whether they are in special education or general education.

“If they’re not taught by a certified dyslexia professional or with the proper instruction, it isn’t going to matter where they are,” said Courtney Hoffman, a lobbyist for the Academic Language Therapy Association.

Jack Fletcher, a University of Houston learning disability researcher who played a big role in creating both federal and state special education law, said special education alone can’t solve the achievement gap for kids with disabilities.

“It takes both general education and special education working together to do that,” Fletcher said. “Kids with dyslexia learn to read just like other kids do,” just with more intensive instruction.

Ideally, he said, schools would offer a “continuum of integrated services” instead of strictly dividing general education and special education.

After her son was put in special education in fourth grade, Margiotta asked if he could still be taught by a qualified reading specialist or dyslexia specialist. The school’s principal said that giving him access to the trained staff in general education when he qualified for special education would be considered “double dipping,” she said. Her request was denied.

That goes against Austin ISD policy, said Bahney, who became special education director in 2016. She said all kids in special education should have access to whatever resources they need, including specialized teachers.

Margiotta is still pushing for the right individualized program that will help her son progress academically. Last year, he mostly learned from computer-based programs instead of from a trained teacher.

She fought to get him 30 minutes four times a week of direct, small group reading instruction intended for kids with dyslexia. When he is not being pulled out for special instruction, he gets extra time to complete assignments, assisted technology, small group testing and individualized reminders to stay on task.

Even after Margiotta hired an attorney to help her negotiate with the district, she is still confused about what he is learning in his one-on-one sessions.

Under federal special education law, she has the legal right to a formal complaint process if she disagrees with how district officials choose to educate her son. She has meetings with district officials as many as six times per year, most involving lawyers.

“I can’t believe I’m still fighting for basic services for a child of this age,” she said.

Margiotta said her son is now feeling too old for some of the services that could help him access more of the curriculum. He doesn’t want an aide to attend classes with him.

“That’s part of the problem now is that he didn’t get the intensive science research-based remediation that he needed,” she said. “Now he’s resistant to the help because he wants to be independent. It’s hard to know what I want right now for him, because some of it’s too late.”

Clarification: This story was updated to clarify that students with different levels of dyslexia are eligible for special education.

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