How Special Education Failed T.J. and Many Children Like Him
Posted October 6, 2018 2:31 p.m. EDT
NEW YORK — By the time T.J. was about 2 1/2 years old, it was clear to his mother that he was already behind. His twin brother was speaking in full sentences. T.J. couldn’t say a word.
“When you have twins,” she said, “you realize if there are some delays.”
So T.J.'s mother, Kerrin, called the pediatrician and asked what she could do. (T.J. and his family members are being identified by their middle names or initials to protect his privacy.) That call began T.J.'s troubled journey through the labyrinthine bureaucracy of New York City’s special education system. A decade later, T.J. is a friendly 12-year-old boy with a generous smile. He giggles while watching cartoons, always says “please” and “thank you” to his teachers, and he makes his brother laugh with his goofy sense of humor.
Even though he has started sixth grade, T.J. still reads at a first-grade level. Instead of composing essays, he struggles with putting sentences together. He forgets to use punctuation. And as his years in school fall away, T.J. is being left behind.
T.J. is one of more than 200,000 students in New York City public schools classified as having a disability, which can be anything from mild dyslexia to a complex physical disorder. These students are a small city unto themselves, and the special education system that serves them is awash in delays, misinformation and confusion.
As Richard A. Carranza settles in as New York City’s new schools chancellor, the scale of the challenges before him in special education is immense. The last school system he oversaw, in Houston, had about the same number of students in total as those who receive special education services in New York.
Every large city in the country has its challenges with special education, and in New York, the system is so tangled, so complex and so large, that the problems that have taken decades to build up seem almost impossible to pick apart.
By the New York City Department of Education’s own accounting, more than 25 percent of students with disabilities, or nearly 50,000, did not receive the kind of specialized instruction to which they were legally entitled in the 2016-17 school year, the most recent year for which that information was available. That was actually better than the year before, when more than 40 percent of students with disabilities did not receive their mandated instruction.
In many cases, the city doesn’t even know if children are getting what they need because the computer system designed to keep track of interventions, which has cost the city at least $130 million, has been riddled with technical glitches and systemic problems since it was instituted in 2011.
While the graduation rate for all students has improved significantly in recent years, just 43.4 percent of students with disabilities finished high school on time in 2017, nearly 30 percentage points lower than the citywide rate. Nearly half of those graduates with disabilities received what’s called a local diploma, with requirements that are less rigorous than the norm.
Will Mantell, a spokesman for the Education Department, said the city has made changes to improve special education by hiring more staff, and enhancing training and data tracking. “We’ve made real progress,” Mantell said. “We know there’s more work to do, and this is a focus area for the chancellor and the DOE.”
In the meantime, for students across the spectrum of disability, navigating the system can be a draining battle. “We find that families of students with a range of needs struggle to get the evaluations and services that their children need,” said Randi Levine, policy director of Advocates for Children of New York, which often intervenes with the Department of Education on behalf of families. “We hear from families whose children only need speech therapy who are having difficulty getting it. And we hear from families whose students have autism and a range of complex needs who are having difficulty getting the classes and services their child needs.”
Even the most informed parents can struggle: Camille Mackler is a lawyer and the director of immigration legal policy at an advocacy organization. When her daughter showed signs of a speech delay and attention difficulties in pre-K, she thought she would be able to get her needs addressed quickly.
At the beginning of November, she submitted a letter formally asking the city for help. In December, the family met with an educational evaluator. In February, the girl was evaluated for speech therapy. In April, the city set up another meeting to decide what therapies she should receive. In May, the meeting happened, and on May 17, six months after the initial request was made, her daughter became eligible for services.
A few weeks later, the school year was over, and the services stopped.
“It really shocked me how difficult it was,” Mackler said. “I can’t imagine somebody who doesn’t speak English, or is not as naturally inclined to be pushy with government agencies.”
T.J.'s parents do not have experience in advocacy like Mackler, nor her law degree. Kerrin is a baby nurse and a nanny, and Kern, T.J.'s stepfather, is a real estate agent. But they are involved parents who have tried hard to stay on top of T.J.'s academic needs. And yet for T.J., and for countless other children, opportunities were repeatedly missed. Services were recommended and then never materialized. Deadlines to re-evaluate T.J. came and went. And even though he has been receiving special education services off and on since he was 2, it wasn’t until he was 12 that his family secured an accurate diagnosis of his problem: mild intellectual disability, a classification that used to be called mental retardation. In the interim, a decade’s worth of interventions and therapy went largely to waste.
“He never got the services he actually needed in order to overcome, or at least deal with, the challenges he faced,” his mother said.
As families struggle to make sense of the special education maze, students can face delay after delay — in being evaluated, in getting services, in being placed in the right classroom — as they fall further and further behind. “I’ve spent a lot of sleepless nights,” Kerrin said, “wondering what his future will be like.”
— Searching for Help
T.J. came to New York City at the age of 2, before he could talk, but his speech still carries a slight Caribbean lilt. Kerrin brought her sons here from Trinidad, and her husband, Kern, is also from that island. Today, they live with their extended family in a red brick house in Crown Heights, Brooklyn.
A federal law called the Individuals With Disabilities Education Act gives all children the right to services and accommodations that will allow them to learn. When T.J. was 2, he began receiving speech and physical therapy, as well as occupational therapy, which is often used to help develop fine motor skills, like the ability to draw with a crayon. All of it was provided by New York City as part of a program called Early Intervention that covers children up to age 3.
A program called the Committee on Preschool Special Education then picks up services for children between the ages of 3 and 5, but it seems to have dropped the ball in T.J.'s case. T.J. was evaluated a few months before his third birthday and found to be well behind his peers, according to of Education Department records. He was recommended for speech and occupational therapy and services from a special-education teacher, but it’s not clear if he ever received them. Kerrin said he got no services after he turned 3. (T.J.'s family does not have all of his records. The family’s lawyer first asked the Education Department for records over a year ago and still has not received them all.)
As part of a process called Turning Five, education officials examine students who have known delays, as well as those who may have disabilities, to decide what services they need and what kind of classroom they should be placed in — should they be among general education students? Or in a smaller setting devoted to children with special needs?
T.J.'s Turning Five evaluation said he needed speech therapy, though Kerrin said she was never told. When T.J. started kindergarten, in a general education classroom at Public School 233, the Langston Hughes School, in East Flatbush, Brooklyn, he received no services for his speech, she said.
Children with disabilities are given what is called an Individualized Education Program, or IEP, a legal document that outlines their challenges and what is needed to address them. T.J. was evaluated again in kindergarten, and found to be behind in a range of areas. His parents said his IEP called for him to be in a small classroom setting with fewer students, but he remained in a general education classroom for the rest of the year, and in the first grade, too.
During second grade, T.J. was moved to a classroom with just 12 students, all with IEPs; he was also receiving extra support in the form of speech and occupational therapy. But he was making almost no progress, and his classmates were “low functioning,” Kerrin said. She panicked, she said, and moved him to Lefferts Gardens Charter School, because she thought at a charter school he would receive more attention and a better education.
Once at Lefferts Gardens, T.J. repeated second grade. And despite the requirements of his IEP, he was put back in a class of about 30 children. According to the New York state Education Department, charter schools are required to either establish a small classroom or arrange for a child to be placed in one at a district school if a child’s IEP calls for such a setting. Kerrin said she talked to his teachers and administrators repeatedly, but, she said, they insisted they did not have enough special education students to create a small, devoted classroom. For third grade, T.J. was again placed in a large classroom.
T.J. “is being pushed up in the system,” she recalled thinking. “He isn’t where he’s supposed to be, and everyone is ignoring it.”
Finally, she said, “one of his teachers reached out to me personally and said, ‘You have rights.'” That teacher guided her to Advocates for Children of New York.
“The system is very hard to navigate,” said Daniel Hochbaum, a lawyer at that organization who represents T.J. and his family. “A parent can’t know everything there is to know on their own. I’m an attorney and I don’t even know all the answers.”
In 2016, after T.J. had been a student at Lefferts Gardens for two years, the school was closed for poor performance, and T.J. transferred schools again, this time to Public School 114, Ryder Elementary School, in Canarsie. There, he was placed in the small classroom mandated by his IEP.
But while he was at Lefferts Gardens, and in the transition that followed, the city Education Department failed to fulfill another obligation.
The department performed a comprehensive evaluation on T.J. in 2009 and another in 2012, and found that he was far behind his peers in a variety of skills and, again, in measures of his overall cognitive abilities. Those examinations, called psychoeducational evaluations, are supposed to be offered every three years, and T.J. was due for another in 2015, while he was a student at Lefferts. Even though he attended a charter school, this remained the responsibility of the Education Department.
But that evaluation was not done. Nor was it done the next year. Or the year after that. Meanwhile, despite being in the small class his IEP called for, T.J. progressed so slowly that the gap between him and other children his age only grew. The classroom was aligned to his IEP, but his IEP was not aligned to his actual diagnosis.
That became clear in the spring, when T.J. was finally re-examined, this time by a private clinic, the Child Study Center at NYU Langone Health, at the city’s expense, after pressure from his lawyer. It was only then that his parents learned that his serious underlying diagnosis had been missed, and years of interventions had been misdirected.
The Education Department declined to comment on any specific aspect of T.J.'s experience, citing privacy laws. — Waiting for Services
T.J. was not the only child waiting.
When an academic year begins, schools are generally supposed to assign therapists to special education students within two school days. If no one is available, the Education Department has 13 days to find a therapist who works on contract with the city. If it can’t find one, the school gives parents a list of therapists and vouchers to pay for their time, and hands off the responsibility.
But according to a report published last year by Letitia James, the New York City public advocate and the Democratic nominee for state attorney general, in some parts of the city, well over half of the vouchers — up to 91 percent in one district — went unused, often because parents could not find therapists.
Even if a child had a voucher the previous year, the family must go through the whole process again. And in practical terms, advocates and providers say, the relatively tight timeline is a mirage. Getting a voucher often takes months.
The therapists also must wait. “I barely get paid for any of the kids in September,” said Carol Schaeffler, a speech language pathologist. “Sometimes it’s months. More often than not, it’s certainly through the end of October.” If the wait goes on too long, Schaeffler said, “you start looking elsewhere, because you need a paycheck.”
Corinne Rello-Anselmi, deputy chief academic officer who oversees special education in the city, said the department has hired more providers in recent years so fewer students will need vouchers, and she emphasized that the numbers are relatively small; the department issued about 9,300 vouchers in the last school year. More broadly, a city spokesman said the Education Department had increased spending on special education by more than $1.1 billion over the past five years. Still, Rello-Anselmi acknowledged the challenges students in the city still face.
The system, she said, is trying to align itself so that regardless of where a child goes to school, “once they’ve been identified as having a special need, we’re able to work with that family continuously,” she said. “That is something that we have made a priority.”
Speaking of T.J.'s case, she added, “We don’t want this experience to be what is currently happening today.”
— Getting a Diagnosis
On a sunny day in April, Kerrin and Kern got T.J.'s new evaluation from the Child Study Center at NYU. For years, T.J. had been classified by the Department Education as having a speech or language impairment, but NYU’s diagnosis was for an intellectual disability. It also diagnosed attention deficit hyperactivity disorder and an anxiety disorder.
“It just all became so real,” Kerrin said.
“Yes he was behind, he was slower than his peers by a bit. You knew something was up,” she said. “Someone should have asked why.” Dr. Helen Tam, a pediatric neuropsychologist at the Child Study Center who evaluated T.J., said evidence had been plainly available to the Education Department for years that showed T.J.'s struggles were more severe than the classification he had been given, and that they warranted more than the services he received.
“What’s unfortunate is that we know there is a lot of growth and development that happens very early on in the brain,” Tam said. “And it seems as though we missed a big chunk of that window.”
T.J.'s intellectual performance generally fell between the first and fifth percentile, according to NYU. How could such serious challenges be missed? Tam said that one reason might be because T.J. is affable and well behaved. Over the years, his IEPs have described him as “a friendly and respectful young boy,” “very playful and funny” and “very kind to others.”
“He’s very socially engaged,” Tam said. “That could have thrown them off.”
As other fifth-graders learned to add, subtract and multiply fractions, and read books like “Investigating the Scientific Method With Max Axiom, Super Scientist,” T.J. worked on basic multiplication and identifying the value of coins, all the while, according to NYU, reading on a first-grade level. Nonetheless, the Education Department said he should start middle school. Kerrin said she hated to do it, but T.J. had already repeated a grade, and school officials told her if children are held back time and time again, they become more likely to drop out.
The department initially assigned him to a middle school in East Flatbush. But Hochbaum, his lawyer, said T.J. would be the only student in his class with an intellectual disability and that the school’s curriculum was not a good match for his needs. The school is also part of the city’s Renewal and Rise program for struggling schools. In the 2017-18 school year, 13 percent of its students passed the state math test and 28 percent scored as proficient in reading.
“It’s a failing school,” Kerrin said. “Why would I want him to go there?”
Instead, Kerrin and Kern are sending T.J. to Cooke Grammar School, a private school that specializes in students with special needs. Every year, thousands of families hire lawyers and sue the Education Department, saying that because no adequate placement exists for them in the public system, the city must pay tuition at a school like Cooke, which can cost anywhere from about $45,000 to more than $100,000 a year. T.J.'s family is doing the same. The city agreed to pay private school tuition for at least 3,795 students in the 2016-17 school year.
Nobody knows how many T.J.s there are in the system, children for whom years were lost and opportunities slipped away. And for each of them, the stakes could not be higher.
“We hear stories about this all the time,” said Lori Podvesker, senior manager of disability and education policy at IncludeNYC, which advocates for people with disabilities, and a member of the city’s Panel for Education Policy. “The same story, actually, in which the parents are involved and they’ve pushed and they’ve been fighting.”
“We failed this kid,” she said of T.J. “We failed this kid, as a system, on every level.”