Their son had autism. Mom didn't speak English well. COVID-19 put school online: One family's fight for special ed services

This story was produced by the Teacher Project, an education reporting fellowship at Columbia Journalism School.

NUTLEY, N.J. – Ever since Carlos Tejada was diagnosed with autism at 13 months old, his parents have struggled to find him the right services. It was not for lack of trying. His mother, Adelaida Checo, attended more than a dozen meetings to discuss his special education plan at the Jersey City elementary school the boy started at age 3.

Checo, who speaks limited English, couldn’t understand most of what was said. “I don’t remember one word” from those meetings, she said. Her husband, Henry Tejada, spoke fluent English but couldn’t attend because of his work schedule.

After Carlos had been at the school, P.S. 14, for more than a year, the family decided a private school would be a better option for the preschooler. Carlos didn’t receive much in the way of extra support at the public school despite being totally nonverbal, according to his parents. “They didn’t show any interest in whether he learned to read or write,” Tejada said. According to Tejada, the first individual education plan (IEP) the school gave them for their son had multiple children's names copied-and-pasted on it. School officials did not respond to several requests for comment.

Given the language gaps, and what Tejada deemed as the school’s lack of support, the fight to get Carlos in a private school dragged on for years. Federal law requires public schools that can’t meet the needs of children with disabilities to pay their tuition at a private school that can – but the process can involve years of meetings, lawsuits and interventions by expensive experts and advocates. “We didn’t realize it was going to be that difficult of a battle,” Tejada said.

Nationally, Hispanic students are consistently the most underrepresented group in terms of accessing private placement. In 2019, the Teacher Project surveyed all 50 states for data on students placed at private special education schools at the public’s expense. Of the 15 states where demographic data was available, Hispanic students were significantly underrepresented in 13 of them. In Texas and California, Hispanic students make up half of the special education population but 29% and 36% of students in private placement, respectively. In Massachusetts, Hispanic students comprise nearly a quarter of the special education population but only 14% of those receiving private placement.

In New Jersey, where the number of Hispanic students has grown rapidly in many communities, the statewide gap is smaller, but that masks stark disparities at the county level. In Camden, half of special education students are Hispanic compared with 15% of those receiving private placement. In Ocean County, one-fifth of special education students are Hispanic compared with only 2% in private placement.

Two main factors cause the gaps: Parents with limited English struggle to navigate their way through a bureaucratic, technical and jargon-laden process – if they even hear about private placement. And very few private schools that serve children with special needs have language support programs.

It's often about the money: Two boys with the same disability tried to get help. The rich student got it quickly, the poor student did not

“Families have to choose between English-as-a-second-language services and special education services,” said Jennifer Rosen Valverde, a professor at Rutgers Law School who focuses on special education.

This became even clearer as the COVID-19 pandemic upended education. Remote learning made it next to impossible for many parents to find special education and language support for their children.

Carlos was not used to sitting in one place for extended periods or learning without support from a teacher or aide, his father said. To make matters worse, Checo was trying to educate Carlos from home with learning material that was primarily in English, which is not her first language.

“On top of being a parent, you had to be the educator, and you had to be the therapist,” Tejada said. “We had to chase him around the house to get him to do anything. And if you pushed him too much, then he would get upset, and then you lose. It was very stressful to educate him because he was out of his routine.”

Carlos is back in school, but the time away was difficult, Tejada said, and Carlos took several steps back developmentally – a common pandemic outcome, experts said.

During the first three months of the lockdown, students had no way of receiving the services guaranteed in their IEPs, such as occupational or speech therapy, said Margaret Churchill, who heads an organization of New Jersey bilingual educators.

“We've all seen major regression, but especially for children with severe disabilities,” Churchill said.

Online school is hard enough: What if you're still learning to speak English?

'The major problem was her language barrier'

For Carlos’ family, the pandemic was the latest obstacle in years of struggle for his education. When he was languishing in public school, they were ahead of many families in that they at least knew about the option to send their son to a private school at taxpayers’ expense. By the time Carlos was 4, his parents realized they wanted a private setting for him. They attended a support group for Spanish-speaking parents of kids with special needs and met families who’d had good experiences with private placement.

Checo talked to her son's teacher and his special education case manager at P.S. 14 about putting him in a private school. While the father was unable to attend most daytime meetings, Checo struggled to make a case on her own.

"The major problem was her language barrier," Tejada said.

When the family requested a translator, the school would bring in whoever was available on staff that day – a secretary or a janitor. "It was never the same person," Tejada said. These staff members often had no knowledge of special education and couldn’t sufficiently translate many of the terms for Checo, according to the family. Tejada said a worker never translated the child’s IEP for his wife, instead asking her to sign a document she hadn't read. “She was given the runaround” whenever she brought up the subject of private school, Tejada said.

Public schools often fail to provide appropriate translators for parents of kids with special needs, said Michael Flom, a special education advocate in New Jersey’s Bergen County. They commonly rely on Spanish-speaking janitors or English-as-a-second-language teachers to translate, who may know little to nothing about special education. When a school official uses a highly technical term such as “diagnostic impression” – which means a child has some characteristics of students with a particular disability, even if she or he has not been diagnosed with that disability – that can easily be misunderstood by both the translator and the parent.

It’s even harder to find translators for languages other than Spanish, Flom said: “It’s pretty much impossible.”

Even if they know private placement exists and have rare access to good translators, non-English-speaking families need to convince the school district of their case, which often means hiring a lawyer or fronting the tuition at a private school – as much as $109,000 a year in New Jersey. Often, according to Susana Barrios, a special education advocate in Maryland, immigrant families don’t know or can’t afford outside support and try to go up against school districts on their own.

Tejada couldn’t afford to hire a lawyer, but when Carlos was in preschool, his father found a pro bono advocate who advised the family on what kind of documents and psychological evaluations they needed to make a case for sending Carlos to a private school.

In 2012, at the end of Carlos' year in preschool, Tejada and his wife had noticed no improvement in Carlos. For them, it was the final straw. Tejada decided to take the fight for private placement to the next level, telling the school he would make a due process complaint so the family could argue the case before a judge.

The district relented, partially, offering a choice between two other public schools, P.S. 30 and Regional Day, a specialized school for students with autism.

The family chose P.S. 30, where Tejada said they felt more respected and "listened to.” At P.S. 30, Carlos got “applied behavior analysis,” a common type of therapy for kids with autism. He still didn't get a one-on-one aide, which his family wanted, and he continued to struggle. Once again, the school relied on a hodgepodge of staff members to translate for the family.

"We were always trying to find ways to get him better services," Tejada said. "We were seeing that it was not working, and he was not showing signs of progress."

New country, new language and many disabilities

Even for non-English-speaking families who do “win” access to private schools paid for by taxpayers, finding a private program with special education and language support can be trying.

The Montgomery school district in Maryland offered to send Davileth Contreras’ son, Luis Valles Contreras, to a “nonpublic” school in 2017 after he got into fights with classmates. (Private special education schools approved to take kids through private placement are often referred to as nonpublic.) "Most of them don't even accept private-paying customers. The only way to get in is if the school system is paying for them," said Barrios, the special education advocate from Maryland.

The mother, who emigrated from Venezuela in the summer of 2016, spoke little English, and her son spoke none. The public school in Maryland diagnosed the teen with attention deficit/hyperactivity disorder, oppositional defiant disorder and “characteristics” of autism, according to Contreras, and kept him isolated from the mainstream population. (In Venezuela, he had interacted with all kinds of students.) Isolation and anxiety led to meltdowns in school, Contreras said.

“There were a lot of changes,” she said, and Luis missed his father, who remained in Venezuela.

In May 2017, the school offered to place Luis in a behavioral program outside the district. Contreras pushed back because Luis would have earned only a certificate upon graduation instead of a diploma. With the help of a pro bono advocate, she kept pushing for different options, and the school suggested four other private schools for Luis. None had English-as-a-second-language services, and the district would not guarantee Luis would be sent to a school with bilingual staff.

Students learning English need bilingual education: But not enough schools offer it

In July 2017, a nonpublic private school called Pathways in Edgewood, Maryland, agreed to hire a bilingual one-on-one aide for Luis. He started in the fall of 2017 and has been there ever since. Transferring to such a small school was a big shock for him, Contreras said. There were about 30 students, and the entire school fits on the top floor of a church. Luis adjusted, but it's still tough for him to make friends because he's the only kid who speaks primarily Spanish.

Parents whose children need special education and language services often have to make a painful – and unjust – choice, said Valverde, the professor at Rutgers Law-Newark. “Most private schools do not have … staff that are both special-education-certified and bilingual,” she said.

Finally, a new school – and progress

After two years at Carlos’ second public school, Tejada and his family felt it wasn't serving his son well. While the boy was in first grade, Tejada resumed the quest to get the case before a judge. Just before Carlos started second grade, Tejada was offered a new job as a building manager in Nutley, New Jersey, and the family moved. Carlos’ new teacher was unusually attentive, according to the family, and within a few weeks, he recommended the child be sent to a private school with specialized services.

"The teacher was the primary person who fought for him," Tejada said.

Within six months, Carlos got what the family had wanted for him ever since preschool: public funding for a more specialized program. In April 2014, Carlos started school at Glenview Academy, a private school in Fairfield, New Jersey.

Carlos, a ninth grader at Glenview, has more structure and his own personal aide. He’s made tremendous gains, Tejada said: "He's more independent. He has everything that we asked him to have.”

Carlos can recognize numbers and learned to love jigsaw puzzles – accomplishments his family couldn’t have imagined a few years ago.

His school is experimenting with different technologies to help Carlos communicate better, such as software on an iPad that lets him tap on pictures to say words. Regardless of whether Carlos ever learns to talk, Tejada reminds himself: "I have to be his voice."

More from this series: Private special ed schools can restrain kids with disabilities 1,000s of times. Parents might not know.

This article originally appeared on USA TODAY: Autism disability, ESL, COVID: One family fights for special education