NYC NOW - In Depth: One Student’s Years-long Struggle to get Proper Instruction for Dyslexia in NYC

Episode Date: September 23, 2023

New York City Mayor Eric Adams has made teaching public school children to read – and particularly children with dyslexia – his signature educational initiative. But for decades, city schools have been relying on disproven reading methods. Teachers have been advised not to tell families when they suspect students may be dyslexic. And families that do receive a diagnosis that their children are dyslexic are often forced to hire pricey attorneys and sue the school district in order to send their children to private schools. Experts estimate 5% to 20% of students may have some degree of the language-based learning disability. But the nation’s largest school system has historically been unable to identify students with dyslexia or offer the support they need. For the last seven months, WNYC’s education reporter Jessica Gould has followed Matthew and his grandmother Trenace Green as they learned he had dyslexia, a revelation that sent them into a complex world of neuropsychiatrists, lawyers and private schools.

Hey folks, I'm Jene Pierre. I know it's Saturday, and we don't usually drop a weekend episode on NYC Now, but today is a little different. Sometimes there are stories that we need to spend more time with that need to go a bit deeper, and we've got one of those stories for you now. In fact, we have a handful of them we'll share in the coming months. This school year is well underway in New York City, and it's a pivotal moment for the public school system.

Mayor Eric Adams' administration has a year. big plans to improve the way children, especially those with dyslexia, learn to read. But in the meantime, many students in the city with dyslexia still struggle to get the help they need. WMYC's education reporter Jessica Gould has been following one student in Harlem and has this story. Tell me why you didn't want to read in front of me. Because I don't feel comfortable to read when other people. why what happens when you read? Well, I get frustrated because sometimes the words are harder to sound out in my head.

And I shut down. What does shutting down mean? Like I stop, I get an attitude sometimes. I start to cry sometimes because it's like struggling because my brain, like, it's like I can't handle it because it's hard. When I met Matthew Green earlier this year, he was eight years old. He'd just been diagnosed with dyslexia, and he had been struggling in school for years.

And like so many kids, he thought that was his fault. Like I wasn't a good kid in second grade. I kept like not doing my work and stuff. Just for boarding class and I just didn't. I don't want to read at all or do my math, but they would call my grandma or my mom, and I would talk with my grandma slowly, try to hold my breath, and she would tell me, just try it best. Can I just need one thing?

Sure. If it wasn't for my grandma, I wouldn't be here right now. He had a really difficult time, and it showed in his behavior. I would get calls at least once a week. You know, him throwing chairs, him. It was really bad. A lot of that I can attribute to he wasn't getting the support that he needed. Trinay's Green is Matthew's grandmother.

She says at one point the teachers were at such a loss. The school gave him a test. teddy bear to try to calm him. By third grade, last year, she was losing her patience. I was like, well, how are you guys going to teach them? And they was like, well, we don't know. We were, I think that we were living almost a Shakespearean tragedy. When you have gifted young people who learn differently

were actually ostracized from society. Dyslexia has been a big focal point for New York City. Mayor Eric Adams. And, you know, Mommy didn't know what was wrong with me. Many teachers thought I was lazy. Adams himself is dyslexic, and he's talked about it many times in public appearances. And it was just a painful moment, and you stand up and you have to read and you stumble over the words, and you cringe, and you start to think differently about yourself.

Surprisingly, though, the city does not track how many students have dyslexia. Experts I've spoken with estimate that anywhere from 5 to 20% of kids have some version of this disability. It's called a language-based learning disability. And there's a lot of concern about what's been called the school-to-prison pipeline. When it comes to dyslexic children who don't get the kind of education they need. 40% of the inmates at our jail, Rikers Island, are dyslexic. and I was on the pathway to join that rank. But for many years, the city's public school system has not been able to support most students with dyslexia.

So what typically happens is that families have to fight to get their children evaluated and then educated. Many of them fall through the cracks, which is why Adams and his school's chancellor, David Banks, say fixing this problem is a top priority. They've rolled out new screeners for dyslexia, they've launched pilot programs, and they've called for an overhaul of literacy instruction across the school system. I wish I could just lean in the air of those young children right now or living in the area of uncertainty to whisper in their air.

Baby, you got this. You got this because your mayor got you. But these plans are just getting started. And the research shows that where Matthew is right now, at eight years old, the window to truly teach him how to read is closing. So that means this is not only a pivotal year for the city and how it teaches dyslexic children,

but it's also a pivotal year for Matthew. So your grandma told me that you wanted to be part of a story about dyslexia and what the city should do. Tell me why you wanted to be part of a story about this. Because I want to inspire the kids to try their best. So let's start at the very beginning. Introduce yourself for me. My name is Trinise Green. I live in Harlem, born and raised in Harlem. I'm the grandmother of Matthew, who's an eight-year-old, who is just recently diagnosed with dyslexia. Trinée's Green is 51, and she's very fashionable. She's wearing a flowy skirt and a wide hat that's perched over her braids.

She works an overnight shift in IT from 11 p.m. to 7 a.m. Then during the day, she relentlessly advocates for her grandson. She says Matthew has always been bright. You know, Matthew thinks a lot and the things, you know, I used to think, wow. And his thought process and the things that he would say would be really advanced, you know, are just like, where did that come from? And that just blew my mind. But even as a toddler, he had tried.

trouble with the alphabet and remembering letters. Can you just go through a couple moments, like real memories, if you can, where you started thinking, oh, maybe there's something different here? He wouldn't retain a lot of information as far as, you know, ABC's, things like that, getting confused with the letters. If I'll say F, so he'll be like, okay, F. but he didn't know what an F was. So he would have to go through the chart, A, B, C, D.

I didn't understand or didn't know that it was dyslexia. I just knew he had problems. And that was up until very recently. Trinace says she noticed as Matthew got older and had to read, he'd get upset and he'd often give up. The work could be cat, for example. And he's very excited because he thinks he knows the word, but he says it wrong. And he'll just be like, okay, I can't do this. And he won't try.

But I'm like, Matthew, if you try, it's okay to make a mistake. That's okay. You know, this is part of learning. We can work through it. But at that point, he's defeated. And he'll just shut down. He won't respond. He won't speak.

you can see the tears beginning to form, and he'll just sit there. Dyslexia is not just about reversing letters or words. Some people with dyslexia do that, but it has more to do with differences in the brain that make it harder for people with dyslexia to match letters and sounds. What we know now is that the right kind of reading instruction can help rewire the brain. That includes teaching letter sounds and combinations,

also known as phonics, through what's called multi-sensory instruction, so moving your hands or your body, and lots and lots of repetition. But I've talked with dozens of teachers, and many of them say they've seen firsthand how city schools are not prepared to serve most students with dyslexia. Why don't you spell your name for?

me as well. T-E-R-E-S-A. Teresa Reneery is one of them. She's now a literacy specialist at a school in the Bronx, but she's spent years as a classroom teacher. I came to the Bronx in 1996. So I have always, for the majority of it, it was kindergarten first and second. So those are those young years where children learn how to read. She told me even her bachelor's degree in early childhood education had not equipped her with the skills she needed to teach kids how to read. And like so many city educators, she was encouraged to teach what are now disproven strategies, like urging kids to guess it words from pictures or from the first letter, instead of sounding them out. This kind of guessing can make it even harder for children to learn to read, and especially kids with dyslexia. But for decades,

that's the instruction that has been widespread in the city's public schools and across the country. So if you look over my career, I personally am responsible for probably 40 to 50 children not learning how to read. That's a hard thing to admit. I personally feel horrible. And that's, I think, why I still keep in touch with my old students. And if any of them needed anything, I would be the first to support them. because I have a lot to make up for. The Adams administration is moving schools away from those disproven strategies.

But teachers also tell me they get a lot of pushback from their principals against even telling families they suspect a kid in their class might have dyslexia. And that makes it harder for parents to figure out what's wrong. Some of the signs that I see are students who have reluctance, like extreme reluctance worth reading to like anxiety. Martina Meyer is a fourth grade teacher at a public school in Brooklyn. What have you been told to say and by whom over the years or not to say as it relates to a kid who you suspect might have dyslexia or some language-based issue? I have been told, and this is true, that I am not a doctor and therefore cannot make a diagnosis. But I am a professional and I have 15 years of experience. And so I do see the science as stated.

And I have been told by every single administrator, meaning specifically principal, that I have ever worked for, that I should not use the word dyslexia with parents. And I've been told, you know, stick to your wheelhouse, stay in your lane. Of course, Matthew didn't understand why his teachers weren't able to reach him. He just knew he couldn't read and he was falling further and further behind. And because the school system is just not equipped to deal with dyslexia, the way that many parents get the help their children need is to sue the city to pay for private school. But that takes money.

It takes connections. And we generally see socioeconomic and racial disparities in who gets to take that route. It's really heartbreaking, you know, because I see it's like as if they really just don't care. about kids children, and it's just heartbreaking. You're listening to a special report from WNYC's Jessica Gould on NYC Now. Our story continues in a moment. This is NYC now from WMYC.

This special episode takes a deep dive into the lives of kids with dyslexia, and the mini hoops families in New York City have to jump through to get them an appropriate education. Here's education reporter Jessica Gould. What's your name? I'm Jessica. Say hi, Miss Jessica. Hi, Ms. Jessica. Hi, everybody.

I visited one of two pilot programs for dyslexia that the city launched last year in public schools. All right, let's see who's ready, who's sitting cross at the sauce. At this one, at PS-125 in Harlem, teachers in the earliest grades, so kindergarten through second grade, have been trained in a method called Orton Gillingham, and that's considered the good. gold standard for teaching kids with dyslexia. And you're going to echo after me. Ready? A, apple, ah. A apple, ah.

It's interactive, it's repetitive, it's multi-sensory. B, bat, bu. Be bat, bu. Kids move their bodies as they learn to sound out words. For bat, they take a swing. For hat, they touch their heads. Ooh, let's do second sounds. Ready?

Ready, second sound? Second sound. S knows. Z. Rule. Rule. When it is after a shaky letter. When it's after a shaky letter.

Good job. You guys are so smart. Experts say students with dyslexia need an especially strong foundation in phonics instruction. They also need small group work and one-on-one lessons and a lot of practice. Kids with dyslexia may have to go over a certain lesson 20 times or more to master it. Ready? Umbrella. Umbrella.

I've spoken with the education department's top literacy officials, and I told them about Matthew's experience. They say stories like his are exactly why the administration is making literacy a top priority. They say families shouldn't have. to turn their lives upside down, and they shouldn't have to go outside the school system for help. They say changes are underway. There are small dyslexia pilot programs, like the one at PS-125, increased screening for reading challenges for all students, and then an overhaul of the literacy curriculum across the system. But all of that is just getting started. Experts say the goal is good, but it's too early to call it a success.

And Matthew didn't have time to wait. Now we're only going to blend it, okay? Contrasting. Contrasting. Similurly. Similarly. By last spring, it was clear to Trinace that Matthew needed more help.

She met with teachers in a special education meeting for what's officially called an individualized education program or IEP. That's a kind of special education roadmap. They suggested a smaller class where he would learn alongside peers with a range of disabilities, and they offered him some psychological counseling. But they didn't offer extra reading support. And the teachers didn't have specialized training in how to teach students with dyslexia.

We do not have a year to take this wait and see approach. I couldn't understand that. And it was scary because it just seems like they're like a bunch of misfit children to just be thrown away. You know, they're defective. No one wants to deal with them. I've heard parents of kids with dyslexia talk about this a lot, this sense of fighting against a system that's hard to understand and it's much bigger than they are. And then they discover there's this whole other world of expensive evaluations and private schools and attorney fees. To some, it's just a cottage industry.

To others, it's a racket. Because there are deep inequities in who gets access to this world outside the public school system. It's just so much to learn. It's just so much to learn and navigate. through this whole system. Trinace was determined to get Matthew into a private school that could help him. I knew it was expensive and I knew it would be hard, but my primary was concerned was like, okay, if this is what he needs, how do I make it happen?

So I kept in touch with her as she set out on what felt to her like this really impossible journey. The first thing Trinace needs is a diagnosis. In order for Matthew to qualify for dyslexia services, a doctor has to say he's dyslexic. And the way to do that is through an evaluation, ideally a neuropsychological evaluation. So really the primary thing that the neuropsych evaluation is looking for is not just a deficit or a weakness in reading in particular, but it's looking at the underlying cognitive skills that contribute to reading. Dr. Laura Phillips is a neuropsychologist at the Child Mind Institute. We really want to get at how well can a child both hear, identify, isolate, and then manipulate the sounds and spoken words.

Among other things, kids read lists of words. Evaluators watch for how fast they can recall words from memory, and whether they can sound out nonsense words that don't have any meaning. So we're looking very closely at their attention. their ability to recruit and sustain attention, their ability to inhibit impulses. But there are really long wait lists for these kinds of evaluations, and they take a lot of time, around 10 hours of testing. Evaluators also gather input from parents and teachers, and this all makes them very expensive, up to $10,000.

And so obviously, the financial piece is a huge barrier to a lot of families. Matthew and Trinace got super lucky. The Child Mind Institute has a study that Matthew qualifies for. So that means he gets seen right away for free. And Trinace gets the piece of paper she needs to move forward to the next step in the process. So tell me what it says. That he has dyslexia. So they recommended him to be in a specialized private school.

But private school comes with its. own exorbitant costs, reaching upwards of $70,000 a year. Under federal law, public school districts like New York cities, are required to pay for private school tuition if the public schools can't provide an adequate education for a child with a learning disability like dyslexia. But in most cases, families have to hire an attorney and file a lawsuit against the city. And so that's the second step. in the process. Retainers range from around $5,000 to $7,000. So you have to hire an attorney just to get your children educated. How is this possible?

There are also non-profits that will represent families for free. So Trinace starts making call after call. Voice mail disabled for this extension. After call. Have to tell them, please record your message. Some never called back. Others said they were totally booked. To Trinace, they seemed overwhelmed by the sheer volume of work. In the city right now, there are more than 10,000 pending complaints for private tuition and other special education reimbursements. The process is so exhausting.

And at one point, Trinace decides to take a one week break from searching. But that makes her feel incredibly guilty. I feel horrible because I'm like I wasted five days that I don't have because, you know, every minute matters. And it's just horrible. Finally, she gets through to a public interest attorney named Andrew Gerst. He represents students at no cost to families. Hi, Ms. Graham, very nice to meet you. I'm Andrew Gerst.

I'm an attorney at Mobilization for Justice. So every child with a disability and an IEP is entitled to something called the free and appropriate public education or a FAPE. But what this basically means is, you know, every child has a right to an education which works for them. That opens you up to any private school you want that it's going to be appropriate for your child. The downside is that you have to file a lawsuit

against New York City every single year to seek funding. Andrew says he'll review her case. Then, some weeks later, he calls to tell her he can represent her. I'm like, oh my God, thank you, thank you. It was a relief. It was just hope. But then it's on to the next challenge. There are a handful of private schools that explicitly serve students with dyslexia in New York City.

But in most cases, they require all but a few parents to pay tuition up front while the city hears their case and processes. their reimbursement. So that means most parents are fronting $70,000 a year, often for two years straight, plus the lawyer's retainer, before getting any money back. That plays a huge role in why the people who go this route are more likely to be affluent and white. City stats show that most of these cases come from the wealthiest districts in the city. Trinace doesn't have tens of thousands of dollars to pay up front. So her next stop is the Sterling School, which is a private school in Brooklyn Heights. Good morning.

Good morning. Hi. Hi. How are you? The Sterling School is unusual because unlike many of the other private schools, the majority of families with students here pay tuition after they successfully sue or settle with the city for reimbursement. And that boosts diverse. Ruth Arberman started the school years ago after she realized the public school system couldn't serve her own son with dyslexia.

One of the problems the public school I think has suffered from is the kid is falling further and further behind, but there's also a negative effect on that child's self-esteem. And that tends to linger and make it harder for that child to learn even when they start to learn. Not only are the teachers here using the kind of hands-on, multi-sensory instruction that dyslexic students need, but they're getting a lot of one-on-one and small group attention. Ruth tells Trunice and Matthew that she's starting out this school year with 20 staff members and just 46 students. And they need that because their deficits are often significant by the time they get to us. The other thing that I think is really helpful for young men and young women is that everybody in school is getting the same amount of help and they all have the same issues. So you don't have to be embarrassed about I can't do something because there are a lot of people who can't do something.

What do you think about that, do you? You think you'll be more comfortable? No. Why not? At first, Matthew is hesitant. Quietly, he says, I want to stay at my school. Well, I understand that. I really do.

Why do you think that is? Because I have a lot of friends. Uh-huh. So are your friends going to disappear just because you change schools? No, okay. Change is hard. And change is scary for most people. Even good change.

But when Ruth takes him on a tour, of the school, his mood starts to lift. So this is our STEM lab. Matthew loves the STEM lab. So just for the listeners, this is a room with a lot of gadgets and gadgets. It's got computers, 3D printers, and robots. And then everywhere he looks, there are stacks and stacks of books.

So where does this leave you? I love this school. I want to share. I got no words. It's so good. Love to school so much. I never coded before. I would love to know how to code.

You're bouncing. Can I go for the school, but I'm off. Matthew started at Sterling earlier this month. He's in fourth grade, and he says he loves it. But to pay tuition, Trunice still has to navigate that labyrinth of a system that has been in place for decades in. New York City. Now she has to sue the city and win, or else pay a large sum of money she doesn't have. So that hangs heavy over my head. It's still a gamble, right? This is really just the

beginning, both for Matthew and also for the Adams administration's efforts to dramatically improve how kids with dyslexia, and really how all kids learn to read. So we'll be checking in with Matthew and with Trinace, and with other students. We'll be talking to them throughout the school year, as Matthew settles into his new school, and as those broader efforts get underway throughout the city. I'm Jessica Gould.

If you have your own story about a student with dyslexia in New York City schools, please reach out. You can reach our education reporter Jessica Gould at JGould at WNYC.org. And be sure to check out additional coverage on our news site, Gothamist. Keep listening to NYC Now for further coverage on the broken system for public school students with dyslexia. This is NYC Now. Be sure to check us out every weekday for your local news headlines and occasional deep dives. I'm Jenae Pierre.