Caleb,* a 14-year-old middle school student in Flatbush, has a seizure disorder and learning delays — the aftereffects of a brain cyst he had removed when he was an infant. He sometimes writes backwards and reads six or seven years below grade level. 

He should be in a special class with 12 children and a teacher certified in special education, according to his Individualized Education Plan (IEP), the legal document that lists the services his school must offer him. Instead, he is in a class of nearly 30 students, a mix of general education and special needs children. His mom says his teachers are doing their best to help, but they can't give him the attention he needs.

Caleb is the victim of a well-intentioned reform designed to end the unneccessary segregation of children with disabilities. Two years ago, the Department of Education declared that nearly all special needs children should be educated in their neighborhood schools, rather than being sent to special programs far from home. Across the city, children who were once assigned to so-called "self-contained" classes are now in classes with two teachers that mix general education and special needs children. Many of these children are thriving, school officials and advocates agree. But, by reducing the availability of self-contained classrooms, the reform has backfired for children who, like Caleb, need a smaller learning environment, advocates say.

However worthy the goals of the reform, the reality is that many kids are now being dumped into large classes and not getting the help they need, advocates, parents and educators tell us. "Theoretically [the reform] made sense," says Mark Alter, professor of educational psychology at NYU. "Were there adequate resources? No. Did they collect data? No. Do they know what is and is not working? No."

Maggie Moroff, a lawyer for Advocates for Children who represents Caleb, says many schools no longer offer self-contained classes, either because they lack the resources or because they are confused about what the reform actually requires. “I think the case illustrates how complicated things can get under the special education reform — where schools are being asked to meet the needs of students who require more than some of the schools are prepared to provide."

The Department of Education says the goal has never been to eliminate all self-contained classes, but rather to ensure that children are educated in what officials call the least restrictive environment — that is, to give disabled children the opportunity to interact with their non-disabled peers.

"The key goal of our reform is ensuring that each student with an IEP gets access to most appropriate set of programs and services," says Stephanie Downey Toledo, deputy of strategy and operations for special education at the DOE. "Self-contained classes were still going to be available." Instead of shuttling kids all around the city to find schools that offer the services they require, the reform asks each neighborhood school to bring that service to the child. If a service is deemed necessary, it should — in theory — be created.

Toledo says that the number of students enrolled in self-contained classes has decreased since the reform and the number of students in team-teaching — classes like Caleb's that have two teachers and mix general ed and special ed children — has increased. She says those numbers are in line with a national trend of improving achievement for special needs kids.

According to data published on the Department of Education website, the number of elementary school children in special classes with 12 children and one teacher declined from 5,022 in 2011-12 to 3,603 in 2013-14. The number of middle school children in those classes declined from 5,575 to 3,713 in the same period. High school students assigned to classes with 15 students and one teacher declined from 8,527 to 5,418, according to the DOE's Periodic Attendance Reporting Statistical Summaries.

Ironically, the reform has made some children even more isolated from their peers. Sixteen-year-old Alison* has extreme speech delays but a normal IQ and has been in and out of self-contained classes for years. After problems at her last school, she was told there was not a single self-contained seat available in Manhattan's District 2 where she lives. Instead, the DOE paid for an instructor to come to her home to teach her. 

Last week, Alison’s in-home teaching services were terminated, her mother says. Now, her mother says, the DOE is insisting that her daughter accept a spot in a setting that is even more restrictive than a self-contained class — a special school in a District 75 program — even though she has no cognitive delays or behavior problems. District 75 serves children with profound disabilities.

Some schools continue to service a wide range of special needs kids effectively. Madeline Seide, parent coordinator at PS 10 and a vocal advocate for special needs children, said that although her school has long offered self-contained classes on several grade levels, she sees other schools struggling to manage their new role as special ed providers. “Some schools don’t know how to implement it, they don’t have special ed teachers, they don’t know how to foster the environment.”

Schools are not supposed to outright deny students the services stated on their IEPs, but persuasion and pressure to accept changes more in line with a school’s comfort zone are commonplace, says Seide. Caleb's case has been complicated by the fact that he is the only student in his grade whose IEP calls for a self-contained class. There were others, says Moroff, but their IEPs have all been changed. "They're not our clients, so we don't know if they were appropriately placed," she said.

DOE officials say they offer professional development to schools and guidance for creating new programs. They also sympathize and offer help for families and students who feel they are not receiving appropriate services. “We have a number of channels for families to access to reach out for help,” says Toledo. “Network support staff, we have emails and phone numbers. We are really working to have more outreach for families.”

Caleb's mom sees things differently. “They make the system so hard,” she says of the DOE. “You have to be like a bulldog on a leash going at them. If you don’t attack them they don’t do anything. I’m sorry it has to be that way.”

While schools struggle to find the resources to fund the city’s vision, students like Alison and Caleb must wait — for evaluation results, for DOE appeals, for an education. “I just want my son to be able to function in society and stand for himself,” says Caleb's mom.

Although Alter has long been a supporter of inclusion, he urges parents not to give up on what they believe. “Change happens because parents fight and because of advocates,” he says.

Register here for New York City Department of Education's Conference for Families of Students with disABILITIES on April 5. Families will have the opportunity to attend workshops, speak with experts and participate in a resource fair with Community Based Organizations (CBOs).

*Names were changed to protect the identities of individuals involved in ongoing appeals with the DOE.