A significant hurdle facing dyslexic children in New York was cleared on Wednesday, when Gov. Kathy Hochul signed a bill into law that requires private insurers to cover the costs of key diagnostic tests.
The bill, the first of its kind passed in the United States, is designed to increase early diagnoses of dyslexia and other learning differences, such as attention deficit hyperactivity disorder, or A.D.H.D.
Education leaders in New York have been slow to understand and adapt to dyslexia, and many students who struggle to read because of the condition are believed to have fallen through the cracks as the state has searched for ways to identify them and help them catch up.
As many as 10 to 20 percent of New York City students are estimated to be dyslexic, a share that Brad Hoylman-Sigal, the state senator who sponsored the bill, referred to as “daunting.”
Diagnostic tests, known as neuropsychological exams, can cost up to $10,000 and are required before parents can request services from schools, Mr. Hoylman-Sigal said. In some cases, children may go undiagnosed because of a lack of access to testing.
“Part of the problem is that most parents don’t have the resources to cover these exams,” he said. “It’s an ‘aha moment’ for so many parents understanding why their child may have been struggling in school.”
It only took 10 minutes with a specialist for Grace Gastel, 12, a middle school student in Lower Manhattan, to receive a dyslexia diagnosis. The test, which she took when she was seven, required her parents to pay $5,000 out of pocket. Learning its results instantly changed her experience in the classroom.
“I think the biggest thing for me is that I had no idea what was going on,” Grace said, describing how she felt at school before she found out she had dyslexia. “Reading was so straightforward as they taught it, but I had no idea how people could learn differently.”
Mr. Hoylman-Sigal’s own 13-year-old daughter found out she had dyslexia in fourth grade. Experts view that as a late diagnosis; ideally, students will be diagnosed between kindergarten and first grade, said Dr. Sally Shaywitz, a professor of pediatric neurology at Yale University’s medical school.
“The frustration is that dyslexia is very common, but it’s often misunderstood and more often ignored, and that hurts children,” Dr. Shaywitz said.
Dinorah DellaCamera, a parent on Long Island whose son, Matthew, is dyslexic, has experienced that dynamic firsthand. When Matthew was in first grade, teachers wrote off his difficulties as typical of a boy his age, and suggested that he was just hyper or had a short attention span.
At one point, she said, they told her that Matthew would never read at grade level. One teacher even said she had never seen a student with dyslexia before.
Ms. DellaCamera said that Matthew’s eventual diagnosis gave her a sense of empowerment and helped her advocate more effectively on his behalf.
Matthew, who is now 13, said in an interview that he had felt “stupid” in kindergarten as his classmates’ reading ability outpaced his.
He quickly gained back his confidence once he was diagnosed, and he is now in accelerated classes in seventh grade — although it took intensive tutoring outside school to reach that level.
“I always wanted to be more like my peers, and I thought it was very unfair that I had to do extra work,” he said. “But luckily, it got me to where I am now. So I’m very grateful.”
Dr. Shaywitz said that many students with dyslexia are exceedingly smart, but begin to feel less intelligent as they struggle to read. Early diagnoses are crucial to ensuring students stay confident, she said.
“People’s idea of what smart is can be distorted,” Dr. Shaywitz said. “And one of the definitions of dyslexia is someone who has trouble reading but has the intelligence to be a much better reader.”
An increase in prominent people speaking out about their dyslexia in recent years — including Gov. Gavin Newsom of California and Mayor Eric Adams of New York City — has helped fight the stigma surrounding the diagnosis, she added.
The new law will alleviate the financial cost of diagnosing dyslexia for many families. But the next and most crucial step, Mr. Hoylman-Sigal said, is increasing screening, a preliminary step to a formal diagnosis that often alerts parents before symptoms fully emerge.
New York is one of only 10 states without legislation mandating screening, according to the National Center on Improving Literacy.
Screening tests generally cost less than $2 per student and take only 30 minutes to administer, but the city and state have yet to make them widely available. As a result, parents and teachers are often left to identify the early signs themselves.
Helen Roussel, a parent of two dyslexic children and a member of the state’s Dyslexia and Dysgraphia Task Force, called the new law “a nice baby step.”
“It’s fantastic, because it means that more children will have access to evaluations and to find out what is going on,” Ms. Roussel said. “One of the worst things for children is to sit there thinking, ‘Oh, my goodness, there’s something wrong with me.’”
That was the case for Ms. Roussel’s daughter, Olivia, 16, who was diagnosed when she was eight years old and in elementary school on Long Island.
Olivia remembers wondering why lessons seemed so much harder for her than for her classmates, and says the shame she felt led her to act out.
“I just felt really embarrassed in class, not knowing the answers when everyone else did,” she said.
That embarrassment can easily be cured with a diagnosis, Dr. Shaywitz said, but is one of the more challenging effects of dyslexia.
Grace Gastel was able to overcome it, and said she had felt more confident in school since her diagnosis. Her frustration was even eventually replaced with an affinity for learning.
“I love school,” Grace said. “Knowing that I’m different and that I’ve gotten the help I need, I’m definitely improving.”
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