Dyslexia advocates want screening for every struggling reader. A Colorado bill takes a first step.

Lindsay Drakos’ daughter didn’t get diagnosed with dyslexia until she was in fifth grade, after years of struggling with reading.

Leaving Children’s Hospital Colorado after a nine-month wait to get screened, Drakos recalled the years she spent reaching out to teachers and wondering if something was wrong. She turned to her daughter and said, “What I learned today is to trust your instincts.”

Her daughter, now 13, replied, “What I learned today is that I’m not dumb.”

Students with dyslexia and their parents have been telling these types of stories to Colorado policy makers for months, pressing them to make sure children are tested earlier for dyslexia, and that those affected receive the right reading instruction. And on Thursday, they packed a hearing room and an overflow chamber and urged Colorado lawmakers to pass legislation that could ultimately expand screening and support for children with dyslexia at younger ages.

The bill, which passed unanimously out of the House Education Committee, would convene a group of parents, educators, and experts in literacy, dyslexia, and special education to make policy recommendations. It would also establish a pilot program to be run in five schools in which the same assessments used to identify struggling readers would be used to see if dyslexia might be an underlying cause. Educators in those schools would get additional support on providing appropriate interventions for students identified as having dyslexia.

The bill is much more modest legislation than what advocates originally had hoped for — dyslexia screening for all children with reading challenges and better training to help teachers recognize dyslexia —  but they’ve come out in support of it as a necessary step to develop a more consistent approach across the state.

State Rep. Janet Buckner, an Aurora Democrat and the bill’s co-sponsor, said she understands where parents of students with dyslexia are coming from because she is one herself. Her daughter, now 41 and a successful professional with a master’s degree, didn’t learn to read until the sixth grade, even as her twin sister breezed through school. Not enough has changed in the decades since her daughters were in elementary school, Buckner said.

“I know what these parents have gone through,” she said. “I’ve lived it. I know how frustrated they are, but if we delay a year, we can do this in a really thoughtful manner.”

By delay, Buckner means the time it will take the working group to look at best practices from around the country and make recommendations on everything from the screening tools used in schools to the training that aspiring educators get in college. Those recommendations should come by the summer 2020.

Parents have connected their fight to a broader debate about reading instruction in Colorado. Roughly 60 percent of third-graders in the state don’t read at grade level. The 2012 READ Act requires reading assessments for all children in kindergarten through third grade and provides additional money to help children who are identified as having significant reading deficiencies.

Students who don’t read at grade level by the end of third grade often struggle in school as their classmates shift from “learning to read” to “reading to learn,” and they are more likely later on to drop of out school, with all the challenges that brings in life.

But since the passage of the READ Act, the number of students with significant reading deficiencies has not budged. Meanwhile, schools don’t get additional money to help students who are below grade level but not in the bottom 15 percent of readers, so those students don’t always get the same level of attention. Many parents said teachers would not screen their children for dyslexia because they weren’t far enough behind. But a lack of early screening meant those same children didn’t get the help they needed and fell further behind academically as they entered the higher elementary grades.

Early screening is critical because dyslexia involves differences in how the brain processes language, and the interventions help retrain the brain. The younger students are when they start that process, the better.

“Those screening tools need to be in place in the school system within the first week of kindergarten,” said Michelle Qazi, associate clinical manager of learning services at Children’s Hospital Colorado and a former classroom teacher. “If kids come in below those benchmarks, then start the intervention right away. It is possible they don’t have dyslexia, but they are below their peers. So let’s get started right away.”

About half of children on READ Act plans have a disability, yet the READ Act makes no mention of dyslexia, and many teachers report having no training in recognizing dyslexia or helping students who have it. The state department of education has been working with parents and plans to release a handbook for school districts this spring, but officials acknowledge there is a lot of work to do.

The state doesn’t know how many students have been identified as dyslexic because districts are not required to report that information. Those students are put in a broader category of specific learning disability. Meanwhile, an estimated 10 and 20 percent of the population have dyslexia.

“Quite frankly, that’s what caught my attention in the first place,” said state Rep. Jim Wilson, a Salida Republican and co-sponsor of the bill, who is a former teacher and school superintendent. “Being an educator, having seen the test scores kind of stagnate and not move the needle, if you can help even 10 percent of the students, that could move the reading scores.”

The Colorado Department of Education is also running a pilot program in 17 schools serving 4,100 students in which rather than doing one-on-one interventions for struggling readers, as envisioned by the READ Act, all of the teachers in the school get more training and coaching in using structured literacy, an approach to reading instruction that focuses on teaching students how to decode words in an explicit and systematic way.

A full evaluation of the data is expected in the fall. However, the initial results have found that students in those schools have lower rates of significant reading deficiencies, according the Melissa Colsman, associate commissioner for the Colorado Department of Education.

This pilot is not focused on students with dyslexia, but they especially benefit from this approach to reading. Many dyslexia advocates believe that if this type of reading instruction were used in all schools, their dyslexic children would need fewer interventions and could spend more time in general education with their classmates.

At the same time, some school districts have their own specialized programs to help children with dyslexia. Falcon School District 49 in El Paso County has a school dedicated to dyslexic students, and the St. Vrain Valley School District convened a dyslexia task force and is expanding programs into new schools.

Some states have instituted the universal screening that advocates want to see in Colorado or have requirements that educator preparation programs include training on dyslexia.

“The pilot has already happened in other areas, so why do we need another one?” asked Orion Watkins, one of several dyslexic students from Vertical Skills Academy, a private school, who testified on behalf of the legislation.

It’s a question many parents have as well.

There are a lot of factors in play. Some districts are using screening tools for struggling readers that can also be used to identify risk factors for dyslexia, while others are not. Teachers don’t have the same level of training in how to interpret the results, and they might not have the same kind of instruction in teaching reading. None of this can be changed overnight, and in a local control state like Colorado, it’s hard for state officials to mandate it.

Colsman said the pilot project can serve as a “bridge” between policy and classroom practice and help more school districts put effective programs in place.

Parents of students with dyslexia have been fighting for better screening and services in districts around the state, but progress too often is dependent on finding sympathetic administrators, they said.

“With a change in administration, all of that progress gets wiped out,” Drakos said. “I just cannot believe this is the best way, that we all have to fight our own battles, and then administration changes and then all that progress goes away.”

That’s why they want a statewide approach. One job of the working group will be to recommend additional legislation that might be needed.

There is also the question of cost.

“I don’t think it’s the local control that makes it so difficult, but the diversity of the school districts and the fiscal ability of a school to address it,” Wilson said.

Bridget Dalton, an associate professor of literacy studies at the University of Colorado’s School of Education, said dyslexic students deserve better interventions, but that shouldn’t be conflated with broader questions about reading instruction.

“It would be overkill to provide that kind of intensive instruction to all children, who benefit from phonics instruction but not at that level,” Dalton said. “If there is too much attention to phonics and phonological awareness and decoding, it turns into a laborious task and could divert them from that love of reading.”

Alison Boardman, an associate professor of education equity and cultural diversity at the University of Colorado, said she’s concerned that students who speak languages other than English are largely absent from the discussion around dyslexia. Those students need screening tools in their dominant language and may benefit from different interventions, like learning to decode in their native language before applying those skills to English.

“We know that dyslexia doesn’t just appear in one language, but it will look different,” she said.

Right now, many students who get a dyslexia diagnosis end up going outside the public school system to get help. Parents described spending tens of thousands of dollars on private screenings, tutors, and private school tuition — options that aren’t available for most low-income families. They also described children who cried through homework every night, who said, “I hate my brain” and “I want to die.” But getting their students the right kind of instruction opened the doors to reading and helped them love school again.

Parent after parent told the committee: “It is not unreasonable to expect our schools to teach our kids to read.”

Today, Drakos’ daughter, who once thought she was “dumb,” loves to read.

“She was a bookworm that was trapped in this dyslexic mind,” Drakos said. “Now if you ask her what your favorite thing to do is, it’s read. And she reads out loud, and I can hear her reading through the vent.

“That’s why I’m fighting.”