State and federal laws entitle every child who has a physical or cognitive disability to a “free and appropriate public education” in the “least restrictive environment.”
But if a child has autism, and parents don’t feel a public school district is reaching that standard, they may have to battle to get it.
Last year, Elliot Mister entered the prekindergarten program at Glenham Elementary School in the Beacon district with an undiagnosed case of autism spectrum disorder. “His teacher almost immediately started pulling me aside,” recalled his father, Andy. “They were calling the security guard because he was trying to run away.”
That surprised his parents because Elliot had not had similar issues at summer camp or preschool at The Randolph School in Wappingers Falls.
To get help from the district, Elliot’s parents said they sent dozens of emails, talked repeatedly with teachers and administrators and spent $1,400 on a special-education advocate. Finally, they filed a complaint with the state Education Department.
(Because of privacy laws, school officials and teachers cannot comment on specific children. However, The Current attempted multiple times to speak to Beacon Superintendent Matt Landahl and Heather Chadwell Dennis, the assistant superintendent for pupil personnel services, who oversees special education, about the services the district provides to neurodivergent children. Each declined to comment.)
In February, six months after he began school, Elliot began spending two hours a day with a special-education teacher who set up a reward system with goals and stickers. He also started receiving occupational and speech therapy.
“It totally helped,” said Andy Mister. But getting there “was Kafkaesque.”
That kind of experience is typical for many parents of neurodivergent children, said Victoria Sanjuan, the family’s Poughkeepsie-based advocate. “Beacon didn’t do anything terrible,” she said.
Triesha Edwards, another special-education advocate, noted that there is space for the education advocacy industry because “special education is highly regulated and parents don’t know how to navigate it.”
Further, autism can sometimes be challenging to diagnose because it manifests in complex and varied ways. “When a child has a diagnosis of cerebral palsy, it is fairly obvious,” said Edwards, who is based in Ulster County. “For a child with autism, it’s not always as clear-cut.”
The number of children diagnosed as autistic is growing. Nationally, 1 in 150 children received the diagnosis in 2000, compared to 1 in 36 today, according to the Centers for Disease Control and Prevention. In New York, 1 percent of special-needs students were diagnosed with autism in 1997, compared to 11 percent today, according to the state Education Department.
That has put financial pressure on school districts, especially smaller ones, because they must provide specialized services to more children but cannot raise taxes above a state-mandated cap without widespread community support. One result is an unregulated industry of advocates that has arisen to help families negotiate with districts for services, said Marie Lewis, clinical director of the National Special Education Advocacy Institute, near Philadelphia.
Lewis estimates there are as many as 10,000 advocates nationwide; rates range from $50 to $250 an hour. Many are parents who were trained on the job while advocating for their own children. The Current spoke to four advocates; each said that more than half of their cases involve autism spectrum disorder.
Case studies
Leilani Rodriguez said she moved from Port Chester to the Highlands because the Westchester County district’s schools lacked occupational therapists to help her autistic son. By contrast, she said, “The special education people in Beacon were amazing.”
She has since moved to Lancaster, Pennsylvania, for work, and said she is frustrated that the Individualized Education Program developed for her son in Beacon has not completely carried forward there. Specifically, the district won’t provide her son with door-to-door service on a small bus. Unlike in Beacon, her son must ride a larger bus, which “overwhelms him,” she said. So, her husband drives their son to and from school each day.
Bryanna Mehling said the Beacon district has been a “very good partner” in helping her neurodivergent child. But it took more than six months to get her elementary schooler a specialized iPad that helps non-verbal students communicate. If a child wants lunch, she can touch an icon that says she’s hungry. Or if the child is angry, there are buttons to indicate moods.
Obtaining the “augmentative and alternative communication device” was delayed while the district looked for an agency to evaluate her child for the device, Mehling said. “Everything has to go through a process.”
Mehling said she paid an advocate $2,200 to help persuade the district to provide additional therapy with the device, as well as other services. “I don’t know how we afforded it, to be honest,” she said.
Since Elliot Mister’s autism was not diagnosed before he entered school, he had to start from scratch, getting tested, meeting with the district’s Committee on Preschool Special Education, creating an Individualized Education Program, and then assembling the service providers necessary to execute the IEP.
His case was also complicated because, at the pre-K level, Beacon had no classes for special-needs children like Elliot. So the district had to search, unsuccessfully, outside of the district for a placement, said Sanjuan, the family’s advocate. “Out-of-district searches are always a debacle,” she said.
In April, the state Education Department, after hearing the Mister family’s complaint, awarded “compensatory services” because of what it ruled was the Beacon district’s initial failure to provide 10 hours a week with a special-education teacher as required under Elliot’s IEP.
In the last five years, according to the Education Department, parents have filed nearly 1,600 complaints against districts they believe are not providing their children the free and appropriate public education required by law. There have also been 80,000 hearings to resolve disputes with local districts.
Those figures include a handful of complaints from parents in the Highlands and a few hearings, as well as settlements reached after frustrated parents threatened to sue. These settlement agreements are typically only available through Freedom of Information Law requests, with names redacted.
The Current has obtained a few through that process. In 2020, the Haldane district in Cold Spring agreed to reimburse the parents of a special-needs student $41,350 for three years of private-school tuition and up to $15,000 for counseling, transportation and attorney’s fees. In 2019, the district paid the parents of a student $70,000, as well as half the tuition at a private school, up to $34,026 annually.
In the latter case, the parents agreed to allow the student to be evaluated and observed at the private school by members of the Haldane Committee on Special Education to develop an IEP, as required by law.
In 2017, an investigation concluded that the Beacon district had failed to provide a high school student with an appropriate public education and reached a settlement with his mother, Melissa Thompson, a former Beacon school board president. She had filed her complaint not with the state but with the federal Office for Civil Rights on behalf of her son, who is Black. She alleged teachers did not fulfill the requirements of his learning plan.
The agreement stipulated that the district provide training to all administrators, teachers and counselors, as well as IEP managers, on implementing learning plans for students with disabilities. At the time, Thompson called that component a “critical piece” of the settlement.
After all their efforts in Beacon, the Misters moved this summer to Vestal, near Binghamton. There, the district wanted to give Elliot only 30 minutes a day with a special-education teacher, so the family hired another advocate to help negotiate an IEP with two hours a day, as well as physical, speech and occupational therapy.
“It seems OK,” Andy Mister said. “But we had to fight for it.”
