Parent-Driven Group Wields Influence on Dyslexia Concerns

Deborah Lynam, a founding member of Decoding Dyslexia, seen with her son Hudson, 11, at their home in Haddon Heights, N.J., has helped build the parent-driven advocacy group into a 50-state movement that presses its concerns nationally.
Deborah Lynam, a founding member of Decoding Dyslexia, seen with her son Hudson, 11, at their home in Haddon Heights, N.J., has helped build the parent-driven advocacy group into a 50-state movement that presses its concerns nationally.
—Charles Mostoller for Education Week
| Corrected: December 11, 2015
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Four years ago, during a train ride to a luncheon sponsored by the National Center for Learning Disabilities, a group of New Jersey parents found they shared the same frustrating story: Their children were struggling to learn to read.

But they felt the schools' reading interventions—if such supports were even offered to their children—were unfocused efforts overseen by educators without specific training in how to address the problem.

That informal connection among parents has since grown into an influential movement, Decoding Dyslexia. Harnessing the power of social media, the grassroots group now has a presence in all 50 states, as well as sympathetic ears among federal and state lawmakers and administrators in the U.S. Department of Education.

"The influx of energy that the parents have invested in this has really started to raise the tide for a lot of other organizations," said Deborah Lynam, one of the original New Jersey parents and among the more visible faces of Decoding Dyslexia. "The parents have just opened the door on something."'

State and Federal Actions

Growing Movement

Decoding Dyslexia started in 2011 with a group of parents in New Jersey. Just four years later, the movement has a presence in all 50 states. A timeline of some of its activities:

OCTOBER 2011: Eight New Jersey parents of children with dyslexia meet on a trip to New York to visit the National Center for Learning Disabilities.

NOVEMBER 2011: The first Decoding Dyslexia-New Jersey meeting is held.

JUNE 2012: Decoding Dyslexia holds its first “Hill Day,” visiting lawmakers in Washington.

OCTOBER 2012: A Decoding Dyslexia promotional video is made at the HBO premiere of the documentary “The Big Picture: Rethinking Dyslexia.”

DECEMBER 2012: New Jersey dyslexia bills are posted.

JANUARY 2013: Decoding Dyslexia-New Jersey releases a guide, “How to Start a Grassroots Movement for Dyslexia.”

MAY 2013: Yale Center for Dyslexia & Creativity hosts a conference in New York City for leaders from 23 state movements.

MARCH 2014: The Emily Tremaine Foundation provides $45,000 to support the DD Social Media Conference in Princeton NJ with leaders from over 40 state movements.

JUNE 2014: The movement launches in Canada. Decoding Dyslexia now has a presence in four provinces.

DECEMBER 2014: Decoding Dyslexia-New Mexico becomes the 50th state organization to join the movement.

MARCH 2015: Decoding Dyslexia hosts a playground exhibit and panel discussion at SXSWedu in Austin, Texas.

JULY 2015: The fourth “Hill Day” features more than 150 in attendance from more than 20 states.

This year alone, 20 states have passed or proposed dyslexia-related legislation. Decoding Dyslexia does not claim credit for all those state moves, Lynam said, but one of the organization's biggest priorities has been to mobilize parents in support of regulations that would define dyslexia in state law, require student screening for the reading disorder, and offer dyslexia-specific professional development for teachers.

This year, Decoding Dyslexia members supported one of the leaders of a bipartisan congressional dyslexia caucus, then-Rep. Bill Cassidy of Louisiana, when he proposed a dyslexia-friendly amendment to the Elementary and Secondary Education Act.

That amendment, which would have allowed schools to use federal teacher-training funds to support professional development on dyslexia, did not pass. But the proposed revisions to the bill rewriting the ESEA that passed the House of Representatives last week include a federally funded comprehensive literacy program that dyslexia advocates hope will advance further knowledge on early reading.

Pushing the Issue

In October, U.S. Secretary of Education Arne Duncan used one of the group's social-media hashtags—#saydyslexia—in a Twitter post promoting new dyslexia-related guidance. The "Dear Colleague" letter from the federal department said that individualized education programs, or IEPs, may use the term "dyslexia."

Some school personnel have been reluctant to use the term, saying that dyslexia is a medical diagnosis, or that educators should focus on specific deficits and not a label. But many parent-advocates say that ignoring the term leads to misunderstanding about just what dyslexia is.

And along the way, representatives of the group have shown up frequently on Capitol Hill and in the White House. Decoding Dyslexia members have been particularly active in Washington this year, as the federal government commemorates the 25th anniversary of the Americans with Disabilities Act and the 40th anniversary of the Individuals with Disabilities Education Act.

It's not a bad showing for a movement that insists on having no leader and shuns most funding in order to maintain its image as an authentic parent voice.

"What they share in common is a devotion and a concern for their children. That makes them very effective advocates," said Sally Shaywitz, the co-director of the Yale Center for Dyslexia and Creativity, which hosted the parent-advocates for a conference in 2013.

"This isn't a peripheral issue, it's not a theoretical issue, it's a 'what makes their heart pound' issue," she said.

Dyslexia's Definition

In federal law, dyslexia falls under the category of specific learning disabilities. More than 2 million of the 6.4 million children covered under the IDEA have a specific learning disability, and most of those children are believed to be dyslexic.

Deborah Lynam, a founding member of Decoding Dyslexia NJ, watches her son Hudson, 11, shoot a bow and arrow at their home in Haddon Heights, N.J. The grassroots organization is now active in all 50 states.
Deborah Lynam, a founding member of Decoding Dyslexia NJ, watches her son Hudson, 11, shoot a bow and arrow at their home in Haddon Heights, N.J. The grassroots organization is now active in all 50 states.
—Charles Mostoller for Education Week

Pinning down specific prevalence numbers is difficult, but estimates have are that 5 percent to 17 percent of the student population has dyslexia.

But the disorder is often misunderstood. Dyslexia does not mean that students have poor vision or that they see letters reversed. Rather, dyslexia affects the way people process written and oral language—a common characteristic is difficulty connecting letters to the sounds that those letters represent.

Children with dyslexia often become adept guessers, which happened with Lynam's youngest son, Hudson, now 11. The reading interventions that he was receiving included prompts, cues, and illustrations, but without those crutches, he was lost.

What her son needed, and whatmany other children need, Lynam said, is research-based and systematic instruction in phonemic awareness (the understanding that words are made up of individual sounds), along with instruction in vocabulary and reading comprehension.

But teachers seem to be missing that knowledge, dyslexia advocates say, even though the National Reading Panel, a committee of reading researchers commissioned by Congress, recommended that comprehensive approach in its landmark 2000 report.

'Say Dyslexia'

Robbi Cooper, a parent in Austin, Texas, who is active with the Decoding Dyslexia organization in that state, notes that Texas has had dyslexia laws that mandate screening and appropriate instruction on the books for decades.

But many students in the state are still not receiving the appropriate academic support they need, Cooper said. A recent change in state law now requires districts to report on the percentage of children with dyslexia that they serve.

Not getting appropriate services goes well beyond literacy, Cooper said.

"Kids are ending up being labeled as [having] behavior problems, every kind of label you can imagine [except] the term dyslexia. It's a lot easier to put a behavior program in place for a kid and just call it a day," she said. That's why it's important to clearly identify students who have the disorder, she said.

"We're talking about kids who don't have any other way of being identified except in the schools," Cooper said. "We don't have a greater need [than other children with disabilities]. We have a greater need for teachers to understand how to identify our kids."

Iowa, the only state in the country that does not sort students into disability categories, passed legislation in 2014 that defined dyslexia as an educational diagnosis and requires the state to create teacher professional development that focuses on evidence-based literary programs.

Randy Califf, a parent in West Des Moines, was one of the Decoing Dyslexia parents who worked on that effort. When his son was first evaluated for his reading struggles, the family was told he had a "language-related learning disorder." Learning he had dyslexia—and that dyslexia could be treated with appropriate interventions—was empowering for his son, he said.

"It's important for our kids to know there is a specific path for them," Califf said.

As Decoding Dyslexia has grown more active, its efforts have seen pushback from educational groups and from some disability advocacy organizations.

Cassidy's proposed amendment to the federal education law, for example, was opposed by the National Down Syndrome Society, the National PTA, and the National Education Association, among others.

"I think it gives the impression, whether it's intended or not, that students with certain types of learning disabilities have more pressing needs than other students with disabilities," Barbara R. Trader, the executive director of TASH, said earlier this year when the ESEA revision was first under debate.

TASH, formerly known as The Association for the Severely Handicapped, is a Washington-based support and advocacy group for people with intellectual disabilities.

In California, an advocacy effort to add dyslexia regulations to state law was ultimately successful, but it was opposed by the California Teachers Association, the California School Boards Association, and the Special Education Local Plan Area (SELPA) Administrators of California, which represents regional agencies that oversee special education in the state.

Concerns From Other Groups

The groups opposed the bill because of concerns that mass screening would be costly and lead to overidentification of dyslexia. The bill's advocates seized on the fact that in a letter of opposition, SELPA officials said that letter reversals—writing "b" for "d," for example—are common in young children and that many children outgrow them.

But letter reversals are not a symptom of dyslexia, and advocates said the assertion from the California group was proof that more teacher training is needed.

The pushback from other groups surprised some Decoding Dyslexia members—and has them recalibrating their message.

Said Cooper: "I think it's a learning experience for our group. Not in a way that changes how I view our mission at all, but one that makes me want to make sure people are aware of what we're asking for and why."

Vol. 35, Issue 14, Page 8

Published in Print: December 9, 2015, as Parent-Driven Group Wields Influence on Dyslexia Issues
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Correction: 
An earlier version of this story said that Robbi Cooper's son is among students in Texas who are not receiving the appropriate academic support they need. Cooper's son is currently receiving appropriate services, she said, but the situation remains difficult for other families.

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