Lenny Garcia's 16-year-old son had his first evaluation for special education services when he was in pre-kindergarten. "The nightmare we've lived through during this whole process – I wouldn't wish it upon anyone," Garcia says.

García, an Ecuadorian immigrant who lives in Sunset Park, Brooklyn, says her son Elias was first diagnosed with emotional disturbance, but she knew there was something else. After years of pushing for further evaluations and consulting physicians, he was found to be suffering from dysgraphia, a learning disability that affects writing; visual-spatial deficits; and executive function disorder. Garcia says Elias also has PTSD after being bullied for his condition. To secure the services and specific class accommodations he needs, the family filed several complaints against the city Department of Education (DOE) and has spent thousands of dollars on evaluations and legal fees. But there is also the personal hardship of dealing with the bureaucracy. "It is tiresome," says Garcia. "It is frustrating. It is a struggle."

Garcia is one of thousands of New York City parents who have sacrificed savings and time fighting for special education services. Under federal law, children are guaranteed free, appropriate education, but New York State reports have found failures at every level of local special education systems, and complaints filed against the city have multiplied in the last few years. Despite some improvements by the city in recent years, initial evaluations are still delayed and mandated services go unprovided. According to the DOE's latest report, for the 2018-19 school year, nearly 16% of students with Individualized Education Programs (IEPs) didn't receive all of their required services and 2% –more than 3,500 students– received none whatsoever. The DOE did not respond to multiple emails and phone calls during this investigation to comment on its plans to improve its services and to meet specific needs for parents from minority communities.

Latino students with special needs depend on these public services the most: 5 out of every 10 students with IEPs in New York City public schools are Hispanic and three are black, according to city data. The proportions don't match the racial and ethnic distribution in the city. Latino kids account for nearly 36% of New Yorkers 5 to 19 years old, according to recent city estimates, but they represent half of the special education population.

In addition, experts from organizations like IncludeNYC and Sinergia, which help families with children with disabilities in New York, agree that the language barrier makes it harder for Hispanic parents to deal with the special education system—notoriously complex and hard to navigate. Parents reportedly lack access to translation and interpretation services, making them unable to communicate with educators and help their kids in their learning process. In Sunset Park, a low-income immigrant neighborhood, nearly half the population speak English less than very well, according to census data. At the same time, children with disabilities are usually sent to schools outside their community because of the lack of special education services in Sunset Park, parents complain. Then it's even harder for the families to participate actively in their kids' education.

These are some reasons Visión Futuro, a community group of more than 30 mothers of children with special needs, formed in the neighborhood last year. The initiative came from Laura Espinoza, an Ecuadorian mother and activist with three children who have gone through the special education system. (Read her story here in Spanish.) Since 2018, Visión Futuro has guided parents through the complex process of requesting and getting services and has fought for more resources for the community.

The stories of these Latino families in Sunset Park are an example of how the city is failing to provide special education services to minority students and the consequences of that failure. Their achievements may show a path to improving the lives of Latino children with special needs in the city.

The 2019 "Compliance Assurance Plan" from the state Education Department details how the city fails to provide free, appropriate public education to students with special needs in violation of federal laws. The report found failures to complete evaluations on time, to transition children effectively from early intervention services to preschool, and to provide services and programs as required. These issues are not new. The report highlights that the DOE has not met the requirements of the Individuals with Disabilities Education Act (IDEA) in full for 13 years.

The city has made improvements. The percentage of students receiving their recommended special education programs in full increased to 84.3% in the 2018-19 school year, from 78.4% the previous year, according to the city's annual report. The DOE has also launched measures to improve monitoring of schools and expanded programs. Mayor Bill de Blasio proposed adding $33 million to the fiscal 2020 special education budget for hiring additional staff. However, advocates, parents and experts say the policies have not been aggressive enough. Many say a systemic change is needed, more resources should be assigned and procedures need to be reviewed.

Early intervention has been shown to improve children's developmental, social and educational gains. But for many in New York, initial evaluations and mandatory services are repeatedly delayed, if provided at all. "Unfortunately, it is a huge game—a time management game," says García. Parents and caregivers have to learn to navigate a system known for its bureaucratic complexity to fight for their kids' rights. "The longer you wait on them, the less time your child has in the school system to get the help that they need," explains the mother.

All students who need special education services must be evaluated and then receive their IEPs, documents that contain information about their strengths, needs and educational program. According to the latest official report on special education, in the 2018-19 school year the city failed to meet the 60-day timeline for evaluating students in a third of cases —a total of 4,220 students. Asian and Latino kids had a higher proportion of delays: over 30% of them weren't evaluated on time. In addition, 3,265 children referred for special education evaluation hadn't been screened at all by the end of the academic year.

In addition, evaluations conducted by the city don't include specific diagnoses, leading some conditions' going undetected. So kids might not get the help they need, as in García's case. Only after a series of evaluations with private providers, including a neuropsychological one, all paid out of the family's pocket, did they learn that Elias suffered from visual-spatial deficits and executive function disorder. Then they had to file a complaint to ensure that he was assigned the right academic setting.

Families have increasingly challenged the DOE's decisions to guarantee that their kids receive mandatory services and the most inclusive school setting. Complaints filed against the city more than doubled from 2014 to 2019 , according to a state-commissioned report obtained by the nonprofit news site The City. The report, published in February, says that some in the education field attribute the hike to an increase in parents seeking reimbursement for private school tuition when the public school system cannot meet their children's needs.

Since the federal government allocates funds to state and local educational agencies, parents and organizations can take civil rights actions to federal courts, and they have done so. In recent years, most civil filings against the DOE at the federal level have been related to special education services and programs, according to data from Syracuse University's TRAC research center. In the U.S. District Court for the Southern District of New York, for example, complaints increased tenfold between 2016 and 2018.

But not all families can hire lawyers or pay for private or better services on their own, especially those from minorities and low-income communities. In neighborhoods like Sunset Park, where more than 11,000 children live below the poverty line, many families can't afford to fight for the education required by law and sue the state. "We shouldn't have to hire a lawyer," says Garcia, who has lived in Sunset Park for 20 years.

García has participated in many groups and initiatives and helped other mothers going through similar challenges. She has always recommended that they do research, educate themselves and become advocates for their kids. "Don't take what they say as a fact; challenge it," she says. "Get one opinion, get two opinions, get three opinions, get five if your gut instinct is to get five."

She describes a tiresome and frustrating fight to get services that should be guaranteed. "But when I see my son today from where he was five years ago, it's amazing," she says, breaking into tears. This winter her son is graduating from high school with a diploma . "They'd told me he was not going to get one."

In Sunset Park, a low-income immigrant neighborhood, eight out of ten residents speak languages other than English at home, most of them Spanish or Chinese, according to census data. This diverse, vibrant community faces an extra challenge in the public special education system: the language barrier. Vanessa*, a Mexican mother who speaks only Spanish, says her teenage son has been enrolled in a special class for a decade, but she has never received a translation of his IEP. These complex documents outline students' strengths and weaknesses, but also goals to tackle their needs and the services provided. Another Hispanic mother, Marina*, wrote to her 4-year-old daughter's school requesting her IEP in Spanish, but the principal directly denied the translation service. She has called the DOE's offices for help multiple times. Most of the time, nobody would speak her language, and she would hang up full in tears. "I feel I can't help my child," she says.

Families' participation is essential to the successful development of a child with any level of disability, studies have shown. Parents of children with special needs whose native language is not English are entitled to receive their child's IEP in their native language and access to interpretation services. Schools are responsible for providing those services, but they have limited resources. As a result, in a city of immigrants, the government has repeatedly failed to guarantee parents access to language services to participate in their children's education.

In recent years, non-profits representing hundreds of parents whose children attend schools across the city have filed a series of class-action lawsuits against the DOE. In 2012 and 2014, the city was sued by Advocates for Children and New York Lawyers for the Public Interest, and in June 2019, by Legal Services NYC.

Since the language barrier can limit minority communities' access to public programs and services, the complaints against the city are based on Title VI of the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, and national origin in programs and activities receiving federal financial assistance. Hundreds of parents reportedly received documents such as letters from teachers, recommendations to address their children's disabilities, meeting notices and consent forms only in English. In addition, they cite failure to provide interpreters in, for example, meetings to determine IEPs. Family members or friends have reportedly been needed to provide translation because of the lack of professionals in schools, according to the complaints.

Bilingual students also struggle for access to other related services in their first language. The DOE's annual report says over 16% of students received only part of their bilingual counseling and speech-language therapy during the 2018–19 school year. In those cases, the report explains, students did hold sessions with the recommended duration and setting, but not in their first language because of shortages of bilingual providers.

The DOE did not respond to repeated phone calls and emails about problems in language services and the results of many initiatives put in place in recent years to address them. In recent years, the Mayor's Office has launched a battery of policies, such as providing schools with direct access to interpreters by phone. Language access coordinators have also been appointed to ensure that local, state and federal laws are enforced. Schools have expanded programs serving kids with special needs, including bilingual classes.

In addition, a pilot program to improve IEP translations was launched in September 2018 in three of the city's 34 school districts: Bronx District 9, Queens District 24 and Special District 75. Under this program, parents can ask the DOE directly, rather than schools, to translate documents. Through the program, the agency translated nearly 2,400 IEPs during the 2018-2019 school year. Its scope is still limited: New York City has 76,000 school children with special needs whose families speak a language other than English at home. Sunset Park school district was not included in this translation program even though, according to census data, a majority of the families don't speak English very well.

After years of being denied full access to their kids' education, a group of immigrant families in Sunset Park decided to take action and in late 2018 started Vision Futuro, led by Laura Espinoza. A decade ago, Espinoza's first son, Jonathan, needed special education services and the family received his IEP in English. By that time, Laura would start her days at 5 a.m., work all day in a clothing factory, then with her husband they would take care of Jonathan and their other child, Britney, and the house. At night, she would finally sit up with the IEP in one hand and an English-Spanish dictionary on the other. "I would look up a word at a time and then put all words translated together," she recalls, but when reading it, "I wouldn't understand anything." Laura felt she couldn't help her son with his learning process. At some point, she decided to quit her job and become involved in the kids' schools. She soon joined the Parent Teacher Association (PTA) and became an active community member.

In 2018, when her 5-year-old twins, Eddy and Edward, were diagnosed with the autism spectrum, she pursued an idea that had been on her mind for years: organizing a parents' group in Sunset Park. The goal was to support one another while also fighting for better services in the community. So far more than 30 parents have participated. They helped Vanessa obtain a translation of her son's IEP last June. Unfortunately, he is already 14 and has just a few years left in the special education system. "I feel that if my son had been given earlier the help he was entitled to, he would have learned more," Vanessa says.

Experts and parents emphasize that principals, teachers and workers usually strive to do their best but are constrained by the lack of resources. There are also cases like Marina's in which schools directly deny these services, but parents may not even know they have the right to ask for them. Before 2011, IEPs had an option for family members to indicate their language preference, but that box was removed. There is no official data on this issue. DOE does not keep track of parents' requests for translation. After multiple complaints, a new bill was introduced at the New York City Council in October to force the city to keep records.

In years of working with Hispanic families, Steffany Ruiz, a family educator at Include NYC, and Godfrey Rivera, co-director of the Autism Initiative and a trainer for Sinergia, agree that they have seen few cases in which parents come to their organizations with their child's IEP in Spanish. They worked for two of the largest organizations that advocate for Latino kids with special needs in the city. Some families, they say, go years without knowing clearly their children's education programs.

Jessica Fernández, a mother from Peru living in Sunset Park, says the language barrier may have even delayed his younger son's diagnosis. The child, Zuriel, wasn't evaluated until the family's bilingual pediatrician helped them. "No one at school had noticed something was wrong with him," she said in Spanish. Zuriel, now 13, was diagnosed with attention deficit hyperactivity disorder (ADHD) and auditory processing disorder (APD). After the IEP meeting, his parents had to do research, learn the educational jargon and figure out how the system worked so the DOE could authorize the services he needed. The family has pushed the DOE to assure regular therapy sessions, sometimes only in English because of the lack of bilingual professionals, and a seat in the best school they could find. "Zuriel is now a very confident child," his mother says proudly. This year, Zuriel learned to go to school by subway on his own.

*Both mothers' real names have been changed because of their immigrant status.

Parents' participation is crucial. They can help design lessons according to their kids' unique needs, monitor the learning process and ensure that services are provided. They are also educators at home. "We can give them therapy without being therapists, help them write without being teachers," Fernandez points out. She recently joined Visión Futuro to help other mothers get involved in their kids' education. The group brings workshops in Spanish to the neighborhood and guides families in navigating the special education system.

Vision Futuro also pushes the DOE for better services and more special education services in Sunset Park schools so kids won't have to commute two hours every day to a school outside their neighborhood. The mothers regularly participate in community board meetings; visit their council district representative, Carlos Menchaca; and hold meetings with city officials. Espinoza explains it frankly: "If we don't speak up, no one will pay attention to us."

The mothers have succeeded in obtaining more resources for their historically underserved community. In June, after multiple requests, they met with Schools Chancellor Richard A. Carranza and handed him a well-researched list of the resources they needed. Two months later, a new special class was opened at P.S. 24 in Sunset Park for kids with autism spectrum disorder under a specialized program called Horizon. The program serves a maximum of eight students with teachers trained in special strategies for students with autism. Espinoza's twins are among the first group. The kids' progress in just a few weeks is impressive. They have expanded their vocabulary and learned how to better communicate their needs and emotions.

Time after time, the Sunset Park mothers have seen that early intervention and providing the services needed can have a profound impact on kids' development. "I know a lot of people feel like dying when they have a child with autism, but if their kids get the help they need, they will not be isolated," says Espinoza. She says the same applies to all kids with special needs. "They will be able to have the same future that anyone else—with the right support."