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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鈥� reading interventions鈥攊f such supports were even offered to their children鈥攚ere 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.

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

State and Federal Actions

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鈥檚 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鈥檚 social-media hashtags鈥�#saydyslexia鈥攊n a Twitter post promoting new dyslexia-related guidance. The 鈥淒ear Colleague鈥� letter from the federal department said that individualized education programs, or IEPs, may use the term 鈥渄yslexia.鈥�

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鈥檚 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.

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

鈥淭his isn鈥檛 a peripheral issue, it鈥檚 not a theoretical issue, it鈥檚 a 鈥榳hat makes their heart pound鈥� issue,鈥� she said.

Dyslexia鈥檚 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.

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鈥攁 common characteristic is difficulty connecting letters to the sounds that those letters represent.

Children with dyslexia often become adept guessers, which happened with Lynam鈥檚 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.

鈥楽ay Dyslexia鈥�

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.

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

鈥淲e鈥檙e talking about kids who don鈥檛 have any other way of being identified except in the schools,鈥� Cooper said. 鈥淲e don鈥檛 have a greater need [than other children with disabilities]. We have a greater need for teachers to understand how to identify our kids.鈥�

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 鈥渓anguage-related learning disorder.鈥� Learning he had dyslexia鈥攁nd that dyslexia could be treated with appropriate interventions鈥攚as empowering for his son, he said.

鈥淚t鈥檚 important for our kids to know there is a specific path for them,鈥� Califf said.

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

Cassidy鈥檚 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.

鈥淚 think it gives the impression, whether it鈥檚 intended or not, that students with certain types of learning disabilities have more pressing needs than other students with disabilities,鈥� 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鈥檚 advocates seized on the fact that in a letter of opposition, SELPA officials said that letter reversals鈥攚riting 鈥渂鈥� for 鈥渄,鈥� for example鈥攁re 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鈥攁nd has them recalibrating their message.

Said Cooper: 鈥淚 think it鈥檚 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鈥檙e asking for and why.鈥�