A few years ago, a group of parents whose children have dyslexia started pushing for New Jersey to require public schools to step up the help they offered to students with the reading disorder.
Ultimately, the legislative process yielded three bills passed in 2013, which ranged from simply putting the definition of dyslexia into state regulations to requiring reading teachers to get training in learning disorders, including dyslexia.
Three years later, those parents and other advocates who joined the push are revisiting what they gained with the legislation and feeling pretty good about what has come from those laws, at least in spirit if not always in practice.
The group Decoding Dyslexia-NJ held an evening forum earlier this month at Rider University to discuss the “state of dyslexia” in New Jersey, hearing from a range of policymakers, educators, and parents.
There were more than a few anecdotes about parents still straining and struggling when dealing with their schools -- and vice versa -- but the leaders said the conversation and its tone have changed for the better.
“The word is coming out in discussions, and people referring to it now, that is a step in the right direction,” said Liz Barnes, one of the founders of DD-NJ and the parent of a dyslexic child. “It’s a slow start, but a start.”
An estimated one to two in 10 students in the United States suffers from some difficulties in reading, with dyslexia the most prevalent of the defined disorders. But since the disorder is a spectrum of difficulty, how schools screen for and respond to it still has gaps.
The bills were to. Six measures were initially filed as a package, with state Sen. Jeff Van Drew and Assemblyman Nelson Albano taking the lead in each chamber. The most significant legislation would have created a new certification for teachers; another would require that students be screened for reading disorders by the end of kindergarten.
In the end, the three bills that passed didn’t go that far. One required that the state finally put the full definition of dyslexia in code, something that had been missing and that gave schools leeway in making their own definitions.
Another required that teachers be trained in reading disorders, although the final version required only two hours of preparation.
The third measure pushed screening back from kindergarten to the second grade, which some school districts maintained would be more appropriate.
In addition to New Jersey, 23 other states have at least some measures in place to specifically address dyslexia, almost all enacted within the past few years.
“It is really within the last two years this explosion has happened,” Barnes said at the forum at Rider University’s Luedeke Center. “New Jersey has really led the wave, and lot of people are watching.”She and other speakers told about an Upper Freehold parent who had her daughter screened before the mother had to ask for it, as well as five teachers in Millstone who were being trained in one of the predominant interventions, known as the Wilson Method.
A team from South Brunswick schools spoke of new and earlier interventions for students, all without committing them to a special education “individualized education plan” (IEP) or even a 504 plan of modified accommodations.
While the law requires screening of students by the end of second grade, a Haworth educator said that all 445 students in her school – from kindergarten through eighth grade -- are screened.
“People are saying the word dyslexia now,” said Alison Pankowski, a reading specialist in Montgomery. “There is different comfort levels of putting it in IEPs … and we’re still having that discussion, but we are at least having that discussion.”
From a parent’s perspective, Haworth mother Karen Leddy said the culture has changed from when her older daughter, now in high school, faced a push and pull with teachers and administrators over her disorder, and for Leddy’s 10-year-old son.
“My son is recognized as dyslexic, we use the word dyslexia, the teachers know he’s dyslexic, they don’t fight things like his use of a calculator,” she said. “There is true support for him in school, and he is thriving today.”
Not all would give such a glowing assessment. One parent spoke up from the audience as to what she said was a “parallel universe” for her dyslexic 11-year-old daughter, who she said has been denied lunch for supposedly exaggerating her struggles to get out of homework.
“I just want to say it still hasn’t infiltrated the entire state,” the mother said.
The audience also included educators; One special education director said the lack of firm guidelines from the state still leaves too many schools guessing in treading the line between classifying a child for special education and providing services short of that.
“For us as practitioners, there needs to be specific guidance or we’re left with over- and under-classification,” she said.
One of the state Department of Education’s leading officials on special-education services spoke at the forum and said a great deal has been accomplished -- and a great deal remains to be accomplished. A new website has gone up with additional resources; some guidelines are already in place; and more training is coming from the department through webinars.
“There is a constant back and forth that we have to maintain to keep current in what we are doing,” said Peggy McDonald, deputy director for special services.
Further guidelines are being developed for kindergarten through third grade, she said, and a handbook for districts is expected by September, being developed by a volunteer committee of both educators and parents.
“I have been personally amazed,” McDonald said. “It has been such a fabulous experience so far that I think will be an extremely helpful resource when it comes out in September.”