Special education: Students with dyslexia disability battle NYC DOE – USA TODAY

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Isaac Rosenthal raises his hand to answer a question posed by one the two teachers in his language learning class. Rosenthal attends The Windward School, which bills itself as "a school for children with dyslexia and language-based learning disabilities. Jasper Colt, USA TODAY
This story was produced by the Teacher Project, an education reporting fellowship at Columbia Journalism School.
NEW YORK – For both boys, the struggles at school started in the first grade.
Isaac Rosenthal was a fast talker with a big vocabulary. But when it came time to read, he couldn’t keep up with his classmates. He didn’t pick up on the rhyme scheme in Dr. Seuss books, and often mispronounced words whose meaning he knew (like “Pacific,” for which he’d substitute “the other ocean”).
Landon Rodriguez, four years younger than Isaac, was energetic and talkative at home but quiet and withdrawn at school. When he brought home reading assignments, Landon often confused Bs and Ds, and he labored through even short passages.
By the end of that seminal school year, both of their parents knew that something was wrong. In second grade, each boy was diagnosed with an unspecified learning disability and started receiving special education services at their public schools. “The teachers had no clue how to teach him,” said Debbie Meyer, Isaac’s mother.
Both families ultimately realized their sons needed support the public schools could not provide, particularly when it came to the all-important task of teaching them to read. 
But that’s where their similarities ended.
Isaac and Landon grew up just 15 blocks from each other in Harlem, but they inhabit very different worlds. Isaac, whose parents make a six-figure income through work as a consultant and liquor distributor executive, goes home each afternoon to a newly renovated brownstone. Landon, whose mother Yolanda immigrated from the Dominican Republic as a child and is raising her three children alone, shares a bedroom with his siblings in a public housing complex.
Both families set their sights on an option known as “private placement”: a federal guarantee that school districts must pay for tuition at a private school if they can’t meet the needs of a child with a disability. That set both families on an arduous and circuitous path – one biased toward wealthier families who have the money to hire pricey lawyers and the time and savvy to do extensive research on how private placement works.
Indeed, once the two families made the decision that their sons’ needs could not be met in the public schools, their educational journeys could not have been more different.  
When Congress passed the landmark Individuals with Disabilities Education Act in 1975, guaranteeing children with learning disabilities a “free and appropriate education” for the first time, it built in the private placement safety net for parents. In some cases, public school officials acknowledge they can’t accommodate a student and agree to pay tuition at a private school. But sometimes families must sue the school district in order to get the tuition covered.
In New York City, where private placement is unusually common, the city spent almost $800 million in the 2016-17 school year on private school tuition for students with disabilities, city budget documents show. City officials settled close to 4,000 lawsuits for tuition reimbursement that year. Washington, D.C., spends about $20 million for 883 students. Overall, private placement is much more popular in coastal states and large cities, where there’s a bigger supply of specialized private schools. There are more than 10,000 privately placed students in both New York and California, compared with only two in Michigan and none in Nevada.
The stakes can be high: In New York City, only half of special education students graduate public high school within four years, and the city itself estimates 15% never receive all the services to which they’re entitled by law. With those odds for public school students, a spot in a specialized private school can be a lifeline.
But which students are getting these coveted funded private school spots? Critics have long argued the process is skewed toward wealthier families, but no federal data exist to show the number or demographics of students who participate in private placement  – much less how they fare. In fact, it’s so confusing that several media outlets have used the wrong numbers to describe the phenomenon, publishing the number of kids in private schools who get some special education services from their districts, rather than the number whose tuitions are funded by the public schools.
To help fill this void, the Teacher Project surveyed all 50 state departments of education about private placement trends. Seventeen states responded with demographic information about students in publicly funded private schools – data that for the most part revealed a stark overrepresentation of white and wealthier students.
In five of the seven states which reported the largest private placement enrollments, white students are significantly overrepresented. In California, Massachusetts and New York, for instance, the share of white students in private placement exceeds the share in public special education by about 10 percentage points. And in both California and Massachusetts, low-income students with disabilities were only half as likely to receive a private placement as their wealthier special education peers. (New York did not release complete income data.) 
Even though it’s technically free, private placement is less accessible to low-income families because securing one often requires lawyers, expensive outside evaluations or other out-of-pocket costs, said Jennifer Valverde, a law professor at Rutgers University who specializes in special education
“Basically, if you’re poor, you’ve got second-class remedies available to you,” she said.
The problem is likely worse than the data even suggest. Most states don’t collect information on students whose (usually wealthy) families place their children in private schools, and then sue the district to reimburse tuition costs for the ones with disabilities. In New York City, more than 4,500 families sued for tuition reimbursement in 2018 alone. 
Beyond the disparities in who gets access to private schools, there are glaring divisions in the quality of the schools themselves. On one end, elite schools in New York City offer state of the art facilities, cutting-edge teaching techniques and sticker prices of $100,000-a-year. But on the other, a tier of schools – often geared toward children with “emotional disturbance” diagnoses, who are disproportionately students of color – practice questionable, sometimes harmful, disciplinary techniques like secluding children in locked rooms at far higher rates than the surrounding public schools. In recent years, for instance, Accotink Academy in Washington, D.C., restrained kids 321 in a single school year, and the Dooley School in Richmond, Virginia, restrained kids nearly 1,000 times (even though it enrolls only 63 students). Both schools have majority-black student bodies and a focus on emotional disturbance.
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Indeed, the investigation showed an utterly unregulated shadow school system that often vaults families with means into nurturing, rigorous schools largely unavailable to their poorer peers. The system shunts the hardest-to-teach kids into schools-of-last-resort, which tend to be subject to fewer checks and balances than their public counterparts.
When Landon’s mom, Yolanda Rodriguez, began looking for a private school for her son, she didn’t know how thoroughly the odds were stacked against her. She just knew she had to act. “At the rate he’s going, he’s not going to be able to pass his classes,” she said last spring. “It’s upsetting, but I’m willing to do anything to help him.”
Before Isaac started kindergarten, his mother, Debbie Meyer, visited the zoned elementary school he was supposed to attend in Harlem’s District 5. She discovered spelling errors on one of the posters a kindergarten teacher had made.
So she sought out another option, eventually settling on Central Park East II, a well-regarded public school that accepts students from across the city. Getting in required some maneuvering. The parents had to meet with school officials and drop Isaac off for a solo visit; they also personally lobbied the school’s principal, according to Debbie.
“I thought we won the lottery,” she said.
At Central Park East II, teachers go by their first names, and Isaac enjoyed the progressive approach, including lessons on chemical processes taught through baking bread.
But as reading became a bigger and bigger part of school, Isaac’s feelings began to change.
“I realized I wasn’t as advanced as my classmates and my friends. I was falling behind,” Isaac, who is now 14, recalled. “It was dehumanizing, like you’re not as good as everyone else.”
When, in second grade, the school diagnosed him with a learning disability, they assigned Isaac basic supports, including meetings with a speech and occupational therapist and a classroom with two teachers.
But they never addressed the root cause of Isaac’s struggles with reading, Debbie said. When the occupational therapist noticed Isaac hunching low over his desk to hide his work during writing assignments, for example, she proposed working on his abdominal conditioning.
Debbie was beginning to suspect something else was going on. Her husband’s family had a history of dyslexia, a disorder that interferes with the brain’s processing of written words, and she recognized the signs in Isaac. (School officials had previously told her they couldn’t specify whether his learning disability was dyslexia.)
At the end of third grade, Debbie tried an experiment. She paid $10,000 to send Isaac to a summer camp for students with dyslexia that included hours of dedicated phonics instruction each day, along with sports and horseback riding. Isaac blossomed there, writing pages-long letters home to his family. The experience affirmed for Debbie that Isaac needed specific reading instruction for kids with dyslexia, something even his comparatively well-resourced public school wasn’t providing.
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Debbie’s sister-in-law had already found her kid with a disability a spot in a private school partially paid by the city. So Debbie knew there were private schools that could offer the kind of specialized teaching Isaac needed.
When Isaac returned to public school for the start of fourth grade, Debbie decided she was going to do everything in her power to make it his last year there.
Just blocks away in the Harlem River public housing project, Yolanda Rodriguez, Landon’s mother, had few of the same resources as Debbie. She knew nothing about dyslexia, couldn’t afford to send her son to a reading-intensive summer camp, and knew no one who had sent a child to a private school on the city’s dime.  
Landon, unlike Isaac, attended his zoned elementary school: PS 76, where only 3% of students were white and 95% received free or reduced-price lunch. Almost a quarter of students at the school had a disability, and Landon slid by undetected for more than two years because he had no behavioral issues and his learning challenges were more subtle.
But Landon had one advantage over many of his classmates: As part of a school partnership with a local nonprofit, he was one of a handful of students assigned an out-of-school mentor in kindergarten.
Almost immediately, Landon’s mentor, a former attorney named Colin Gilland, noticed the young boy had unusual difficulty reading. “The early reports from the teacher were that he was doing great,” Gilland recalled. “So I was surprised, because when I did homework with him, he struggled with reading.”
The problems continued when Landon moved to nearby PS 200 in first grade. In second grade, Gilland asked the school to give Landon an evaluation, then watched with dismay as a teacher simply read words aloud and asked Landon to repeat them.
The school district ultimately reached a similar conclusion as it had with Isaac: Landon was diagnosed with an unspecified learning disability and put in a class with other special education students. Many of them had severe behavioral and emotional needs.
Landon got little-to-no specialized support in reading. By the time he finished second grade, he was still reading at a kindergarten reading level. “It’s frustrating seeing your son trying to struggle to read,” Yolanda said. “Especially when he starts crying.”
Yolanda had no idea publicly funded private schools were even an option – until Gilland told her about them.
After Debbie decided she wanted a taxpayer-paid spot in a private school for Isaac, she followed a well-worn playbook she had picked up from family and friends. 
She knew from their stories that it was unlikely Isaac’s special education team at Central Park East would recommend him for a private placement. And she wasn’t willing to wait to find out.  
So the family began preparing to get Isaac a private school slot through “place and chase”: paying the tuition out of pocket and then suing the city for reimbursement.
This more costly route is used frequently in the wealthiest parts of the city, and almost never in the poorest parts, advocates say. 
Debbie’s first step was hiring a lawyer.
She selected from a range of special education law firms, many of which specialize in private placement. Attorney Neal Rosenberg stood out, having successfully represented the former head of telecom giant Viacom, who got the government to reimburse private-school tuition for his son. The case eventually reached the Supreme Court, establishing the precedent that a family does not even have to enroll their child in a public school before suing for reimbursement at a private one. Isaac’s family paid Rosenberg a retainer of $2,500.
Next, Debbie knew, Isaac would need to take a time-consuming and costly medical exam called a neuropsych. The exams, which usually cost $5,000 and are almost never covered by insurance, have become a necessary step for families seeking a private placement. They can definitively diagnose conditions like dyslexia, measure how far a student has fallen behind in class, and even recommend specific teaching approaches or private schools.
With a neuropsych in hand, families can make a stronger case to their public school and, if necessary, to a special education court, that their child’s current school isn’t working, said Jared Stein, a lawyer at the nonprofit Advocates for Children. Some private schools also consider the neuropsychs when they’re deciding who to admit.
For families who can afford the exam out of pocket, options abound. Debbie, for example, got a bevy of recommendations for neuropsychologists from her sister-in-law, a doctor, and ultimately interviewed five before making her decision. The results confirmed Isaac had dyslexia and an above-average IQ. 
With the neuropsych and lawyer on their side, the family began touring private schools. Because they could afford to pay tuition up front, Isaac’s family could look at more than the “approved” special education private schools that are set up to receive tuition funding directly from the city. They could consider a diverse array of “nonapproved” private schools where parents typically have to front the tuition – and then hope they win their lawsuit.   
Debbie visited five “nonapproved” private schools during the second half of Isaac’s fourth grade year and fell in love with one of them.
The Windward School, a $54,000-a-year institution with a gleaming Upper East Side building, has a standard class size of 12, with two teachers assigned to each room. The school is an acknowledged leader in educating children with dyslexia and runs its own training institute; even gym teachers are required to study the science of reading. Best of all, Windward emphasized its ultimate goal was to get students back into mainstream schools. Debbie knew it was the right place for Isaac.
“We were willing to do whatever we had to do: take equity on our house, ask our relatives, whatever we needed to do to make it happen,” Debbie said.
Isaac passed Windward’s entrance exam in the spring of his fourth grade year, and the family put down a $5,000 deposit to secure a spot for the coming fall. That summer, the family’s lawyer notified the city they were planning to place Isaac in a private school and sue for reimbursement. 
Just the threat was enough. City officials ultimately agreed in an out-of-court settlement to reimburse about 80% of Isaac’s tuition costs. Isaac started Windward that September as a fifth grader.
As Isaac recalls, it was the first time he realized “there are other kids like me.” 
Yolanda’s options were more limited. She would never be able to front tuition payments, so when Landon was in third grade, she started trying to convince his public school, PS 242 (his family had moved him again in search of better services) to recommend him for private placement. Unlike Isaac’s family, she had no lawyer on her side. 
School officials repeatedly told her public school was Landon’s only option. “When people see you by yourself, they feel like they can talk to you any type of way,” she said.
Yolanda, who works at a nonprofit helping victims of sex-trafficking, couldn’t afford the retainer most private lawyers charge; she had to find a free one. Luckily, Landon’s mentor put them in touch with Stein at Advocates for Children, which helps low-income families obtain special education services.
Stein says many low-income families aren’t so lucky. “There’s definitely far more need than availability,” he said.
Next, like Isaac, Landon would need a neuropsych. Families who can’t afford the neuropsych out of pocket typically have to wait months for it. Only two organizations in the city offer the evaluation pro bono, and both have long waiting lists.
Once school started in the fall, Yolanda and Landon visited several state-approved private schools, so they’d have some options lined up if the school relented. Landon loved The Community School in Teaneck, New Jersey, a small, grassy campus with classes of just five or six students. School officials even said they had a slot open.
Four months after joining the waitlist for a neuropsych, Landon finally got an appointment. The conclusion was exactly the same as in Isaac’s case: Landon had dyslexia and an above-average IQ.
For Yolanda, the diagnosis was a sort of epiphany. She realized some of Landon’s obstinate behaviors, including refusing to finish homework, were rooted in an inability to understand the work. “I finally understood why he was acting the way he was acting,” she said. “It made me have more heart, and made me have more patience with him.”
But the delay in accessing the neuropsych would ultimately cost the family. When the lawyer presented Landon’s school with the results in January, officials relented, but only in part. They didn’t permanently approve Landon for a private school, but said he could attend one for the remainder of that school year.  After that, he would have to return to the public system.
By that point, however, there were no spots left at any of the state-approved private schools that specialize in dyslexia, including at The Community School.
Since Yolanda could not afford to go off the state-approved list, she knew Landon would have to remain at PS 242 for the foreseeable future. In February, she broke the news to her son.  
“I had to tell him it would’ve been different if I just had the money to go somewhere else.”
Landon’s story illustrates what several families, advocates and researchers say is the double disadvantage of private placement: Poorer families not only face bigger barriers in securing it, but also are presented with few high-quality options once they do.  
“There’s a significant difference within the approved schools in terms of the quality,” said Greg Cangiano, a New York special education lawyer. That’s true not just in New York but across the country.
In this sense, the private landscape mimics the public one. But families said it can feel like a betrayal to go through the arduous and often emotionally exhausting process of accessing private placement only to discover options that seem worse than the public schools.
In New York, competition for the most popular private placement schools has only grown more fierce as several have opened up to students whose families pay their own way or front the tuition, subsequently suing the city for reimbursement. That leaves fewer and fewer slots for parents like Yolanda.
Partly as a result, advocates say, the top special needs private schools on the state-approved list increasingly enroll wealthier and whiter student bodies. Thirty percent of the almost 3,000 students the city recommended for state-approved private schools last year were white, even though white students make up less than 15% of the city’s special education enrollment, state data show.
For its part, the New York City Department of Education said it is working to make it easier for parents of all income levels to access special education options for students.
“We have hired more staff and added more programs through our $33 million citywide investment in special education and have been working hand in hand with the state to improve the impartial hearing process so that all families can pursue their due process rights quickly and easily,” spokeswoman Danielle Filson said.
Almost as soon as Isaac started at Windward as a fifth grader, his reading started to improve. He learned rules for sounding out words he didn’t recognize, and teachers across subjects coordinated to help him better understand language patterns. All reading materials were tailored to his level; teachers even rewrote New York Times articles in simpler language.
Three weeks into his fifth grade year, Isaac called down from his bedroom asking to keep the lights on so he could continue reading. “My husband and I looked at each other like: ‘Who is that child up there? Where did he come from?’ ” Debbie recalled.
Windward would not let a reporter sit in on classes. But in an interview, principal John Russell said its approach relies on a near-religious adherence to reading science.
Each lesson is scripted in painstaking detail, and each moment of the day is a chance to reinforce language and vocabulary lessons. Teachers, for example, never instruct students to talk to each other during lessons, a common feature of mainstream classes, for fear that they’ll pick up classmates’ speaking errors. Instead, they designate time for students to check in individually with teachers.
The results are impressive: Thirty-six percent of students who have entered the school since 2005 had scored below average on a national reading exam. By the time they left the school, the number was down to 4%, according to Russell. New York City Schools Chancellor Richard Carranza visited last year to pick up tips for the city’s approach to teaching literacy.
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Windward is picky about who it lets in. Students must have both a dyslexia diagnosis and an above-average score on an IQ test, and they can’t have a history of serious behavior or attention deficit problems. The selective admissions allows the school to create “homogenous” classes of students with nearly identical learning needs, Russell said.
But “there’s a huge lack of diversity” at Windward, Debbie says. Eighty-four percent of the students are white. Some of Isaac’s classmates arrived at school in limousines or town cars. A plaque in the school’s lobby commemorates two of the school’s largest donors: the Hollywood power couple Michael Douglas and Catherine Zeta-Jones, whose son attended the school.
Isaac missed the diverse group of friends he made at his public elementary school, though he stayed in touch with a number of them. Windward ends in eighth grade, so when Isaac graduated last spring, he was one of only a handful of students from his class to attend a public high school. At Bard Early College High, Isaac will earn an associate degree along with his high school diploma.
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The family doesn’t regret its decision. Over a meal last year in an Upper West Side diner, Isaac and Debbie ticked off how much had changed in just four years.
Isaac is now a confident reader: Last spring he finished "The Autobiography of Malcolm X." He’s written complex research papers on topics like the Harlem Renaissance, and recently took and passed two state Regents exams – standardized tests students typically don’t take until high school.
At Windward, “his whole self-image changed,” Debbie said.
After the disappointment of seeing a coveted slot at The Community School open up and then slip away before his approval came through, Landon finished out the school year at PS 242. Over the last few months, his situation there grew worse.
Early last spring, one of the two teachers for Landon’s class of 20 quit. She was not replaced. Many of the kids in the class, a mixture of special education and regular students, have serious behavior needs. Landon said there were classroom fights almost every day, and his teacher often lost his voice from screaming. He often spent independent reading time with his head down on his desk. Toward the end of the school year, his mom said he hadn’t brought home a homework assignment in months.
It’s not that PS 242 was a bad school, Yolanda said. Her youngest daughter, who doesn’t have special education needs, is thriving there. But the school simply couldn’t accommodate Landon, she said.
The city's Department of Education is "committed to supporting students with dyslexia and reading disabilities," spokeswoman Filson said in an email. "Over the last four years we have trained approximately 10,000 teachers in reading programs.”
But at PS 242, the situation seemed hopeless for Landon. “We can’t really learn anything,” he said. 
The temporary approval he’d gotten to attend a private school at city expense expired at the end of the school year. The family filed a lawsuit with Stein, their pro bono lawyer.
In June they got some good news. Just weeks after Stein notified the city of the lawsuit, the school’s special education team told the family it had “reconsidered,” and would now recommend Landon for a private school placement starting in the fall.
In September, Landon started classes at the Community School  – the one in New Jersey he liked. He’s one of six students in his class, and he spends almost an hour each day on games and drills to help him decode words. “It helps me read more,” Landon said. 
The sudden success feels especially sweet because of the difficult path the family traveled to get there.
“I feel like we made it,” Yolanda said. “Because it was a struggle and I watched him cry, be frustrated, be upset. Now he’s so happy. It’s a good feeling.”
She added, “He wants to go to school now.”
Sarah Carr and Sharon Lurye contributed to this report.
Corrections and Clarifications: A previous version of this story used an outdated number to show how many special education students in New York City never receive all the services they're entitled to by law. The city estimates that figure at 15%. The story also has been updated to reflect that Debbie Meyer has one sister-in-law who found a private school for her child with a disability.
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