By Carson Kessler & Currie Engel
When psychiatrists told Michelle Sanchez that her first-born child Melody was autistic, her world stopped. She thought about how her daughter might never say her own name. She thought about how Melody might not be able to ask her father to “pass the milk” during breakfast. She thought about how Melody could struggle to connect with other children at the playground and how other mothers would treat her daughter at the park.
As the psychologist explained the things that would set her apart, Michelle and her husband tried to take it all in. “It destroyed me completely,” Michelle said. The last thing on her mind that day was that her daughter wouldn’t have a spot in a Pre-K classroom.
Four years later, Mayor Bill de Blasio’s signs for “PRE-K FOR ALL!” are plastered all over New York subways—reminding parents with children born in 2016, like Melody, that yes, there was a spot for them in a classroom for the 2020-2021 school year. It’s one of de Blasio’s major political platforms—universal Pre-K. And while this policy has helped many New Yorkers gain access to important early education, a significant swath of children with special needs has been overlooked.
This year, more than 1,900 preschoolers with special needs were left behind, without a spot in a special needs classroom, according to a January 2020 report by Advocates for Children. More than 40 percent of those students live in the Bronx, a borough historically marked by poverty and a lack of community resources. When it came time to start Pre-K, Melody was just one of the 798 special needs students in the Bronx without a seat.
According to Aeri Pang, a special education lawyer, the Department of Education usually relies on community-based organizations to provide the majority of special needs classrooms for city students. But Advocates for Children says that the state underfunds these programs, and over the past few years 30 of these community-based organizations have shut down special needs-focused classrooms, while others worry that they, too, will have to shut down. As a result, the system in place has been overwhelmed. Special education includes classroom instruction as well as therapy at home, hospitals, and other public institutions.
Still, the city has not stepped in to remedy the situation.
Getting Melody into a school was a priority for Michelle. She refused to accept that her daughter might have to sit at home when she could be learning in school, like other kids her age.
Now three years old, Melody Sanchez loves sparkly hair bows, puzzles, and dancing. But unlike other girls her age, she coos and babbles instead of communicating with words. She does what her mother refers to as “flappy hands,” a common self-stimulatory behavior among children with autism, when she’s excited.
Sometimes Melody isolates herself in corners, head down and body tucked away from the rest of her family. Even though Melody was tall for her age, with curly black hair and a toothy smile, Michelle noticed that her daughter failed to meet typical milestones. Melody was different. She would need occupational, behavioral, and speech therapy—both at home and later, at school. But Melody was in danger of not getting those essential resources.
“This is not a new problem,” said Pang, the special needs attorney. In fact, over the past 45 years, at least four class action lawsuits have been filed in the city in an attempt to remedy this issue. In 1975, the U.S. passed the Education for Handicapped Act, its first federal law mandating educational equity for students with special needs across the nation.
The first class action lawsuit filed in New York City dealing with delay and lack of services for children with special education needs, Jose P. v. Board of Education, was filed in 1979. Then came a 1994 special needs education reform lawsuit, and yet another in 2003, resulting in a 2015 settlement.
But in the intervening years, New York City’s problems have persisted. New Yorkers filed a fourth lawsuit in February dealing with the same problem they tried to remedy 25 years before. Education Week, which covers K-12 education, reports on this most recent lawsuit, which alleges that it takes an average of 259 days for a complaint about the education system to filter through legal channels in New York, rather than the federally imposed 75-day limit.
The Department of Education’s Committee on Preschool Special Education (CPSE) is responsible for coordinating the special education process for preschool children ages three to five. But sometimes it takes more than a CSPE administrator to get a student into school.
With limited options, Michelle worked closely with her CSPE administrator, Carol Breaves, and with Sylvia Rojas, an independent coordinator from Thrive By 5, an organization designed to help parents find services for children with special needs. Michelle herself called more than ten different schools, desperate to find a spot. Each time, she was told the same thing: “Sorry, your daughter will have to be put on our waitlist.”
A week would go by, and then another, and another. Michelle, unable to work one of her part-time jobs, had to coordinate a new schedule with her husband. They each took turns caring for Melody and their one-year-old son.
“I would cry,” Michelle recalled, “because what else as a parent can I do?”
Almost a month after school had started, Michelle finally got a call from her supervisor while she was at work, on her shift as an adult computer literacy teacher. Melody could finally enroll at her local public elementary school, PS-352 in the Bronx. Michelle ran. No one would take that coveted spot away from her daughter. A few hours later, Melody finally had a spot in school.
The school was not nearby, but that was all right with Michelle. School would be the best thing for Melody, she said. “She’s going to be socialized and she’s gonna have that experience of being inside a school setting in which she can interact with kids. She’s gonna get help there.” Despite the hour-long commute each way, Michelle was thankful—early morning wake-ups, long bus rides, and all.
Unfortunately, long bus rides are a common sacrifice many children make for that coveted spot in the classroom, said Pang. “If the child is being bused, it’s a huge problem. There will be days when a severely disabled student will be on a bus for two hours, sometimes three hours,” she said. “I’ve had clients with who have severe needs, who are on a bus in diapers who have completely soiled themselves in the two hour ride. It’s not right. These children need to be educated near their homes.”
Michelle wished the commute for her daughter was shorter, but took what she could get.
A spot in school meant Melody would no longer be isolated at home, a situation which can often stagnate verbal progress in autistic children. Michelle remains hopeful that Melody’s “babbling” will someday progress to verbal communication, but that depends in part on the care and therapy she receives at school.
Already, Michelle says, Melody is improving. “She wouldn’t even look at you, no eye contact at all and she wouldn’t even respond to her name,” Michelle said of the “old Melody.” “Now, just calling her ‘Melody,’ she will look at me like, ‘Mommy is calling me.’ She will come running and hug me.” These little steps make Michelle feel like the fight has been worthwhile—the therapists are accomplishing something.
Pang says that she has seen the opposite—the direct effect of inconsistent special education resources can have for a child with special needs. She remembers looking through a 15-year-old client’s special education records, which chronicle verbal or behavioral progress from the age of three. The client’s special education services had been discontinued on multiple occasions over the years. “The child started out with words and has lost them,” she said. “You can try to get those back, and sometimes there’s limited success, but it’s not the same. That child would have been in a much different place at 15 if he had been receiving these services all along.”
Pang believes the shortage of space for these special needs kids all comes down to the way special needs children are first evaluated. In New York, children are supposed to be evaluated and placed in a classroom within 60 days of when the family gave consent to evaluate. However, that part of the special education process is extremely slow, said Pang.
“Delay builds upon delay,” she said. “Once the student is identified and placed into or recommended a program, there are just not enough seats.” The slow evaluation of these children and their needs, she said, leads to a greater number of students with a legal obligation to a seat than the number of seats that the state initially allocated.
Despite these bureaucratic issues, parents like Michelle have to keep pushing for their children’s education. There’s no time to critique the system. Time is of the essence.
In just two years, Michelle’s second child, one-year-old Ian, will also need a spot in a special needs Pre-K.
Ian was born with Erb’s palsy, a condition caused by nerve damage that has paralyzed his left arm. Michelle also worries that he, too, may be autistic. But for now, she is determined to start the search for a school early, having learned the hard way with Melody, that spots are few and demand is high.
Despite her children’s diagnoses, the mother of two dreams that one day her children will live independent lives. She wants them to rely on themselves, to dream big, and to never take no for an answer. She implores Ian and Melody to keep pushing for what they deserve—much like her own journey to educate them in the New York school system.
“A diagnosis is just a diagnosis,” she said, imagining what she’d tell her teen-aged kids one day. “Don’t let that be the last word. Just fight for everything you want in life. Find resources. Go for it.”
Watch the full video of Michelle’s journey here.