Parents Go to Battle Over Autism Services

Options inadequate and too far away

According to Autism Speaks, an advocacy group, 25 private schools east of Medford and west of Hauppauge offer specialized education for autistic children — but there are none on the East End. 

Still, superintendents from East Hampton, Bridgehampton, Montauk, Springs, and Sag Harbor have insisted that a proposed school for children on the autism spectrum, which Kevin Gersh seeks to open in the vacant Child Development Center of the Hamptons building in Wainscott, is not needed.

“We do not have a need,” Debra Winter, the Springs School superintendent, said this week. “Our children are being taken care of.” 

Ms. Winter and her fellow superintendents had delivered the message during an East Hampton Town Board meeting in November that the existing special-education services provided by their districts meet or exceed all standards, and Mr. Gersh is not wanted or needed here.  

Parents of autistic children who live between Southampton and Montauk largely beg to differ. And it is the “we” in the superintendent’s remarks that particularly irks them.

“When investigating whether a service is being provided adequately,” Julian Barrowcliffe, the father of a 3-year-old autistic boy in Sag Harbor, told the East Hampton Town Board at Tuesday’s work session, “the person to ask is never the service provider, but the service consumers.”

Erica Remkus of Sag Harbor has a 9-year-old autistic son. Although he is extremely low-functioning, he has attended the Pierson School since the 2015-16 school year, when it revamped its special-education program and hired Lisa Macaluso, a licensed applied-behavior analyst. “I called her the autism whisperer,” Ms. Remkus said. “She’s a phenomenal teacher.” Unfortunately, according to the mother, financial issues arose and Ms. Macaluso resigned and was replaced by a teacher she considered much less experienced.

“My son functions at the level of someone between 8 months and 2 years. But he no longer receives crucial applied behavior analysis work that he did with Lisa. The school says they use A.B.A. methods, but that’s not enough. Not for him. To hear the superintendents tooting their own horns is disgusting,” Ms. Remkus said.

J’Aime Schiavoni is 26 and suffers from autism and other disorders on the spectrum, according to her mother, Gail Schiavoni, also of Sag Harbor. 

The younger Ms. Schiavoni is quite high-functioning and attended Pierson throughout her academic life. “You know the story of Galileo?” she asked over the phone on Monday. “It was kind of like that for me at Pierson. Teachers needed a scapegoat, kids needing a verbal punching bag, and I was it.” She was taunted and bullied to the extent, said her mother, that it is still too traumatic for her to even drive past the school. 

After her daughter graduated with an individualized education plan at the age of 18, Ms. Schiavoni sued the school district for failing to provide adequate services. The Schiavonis won, and because schools are required to provide an education for special-needs students until they are 21, Pierson had to pay for J’Aime to attend the Westbrook Preparatory School, a residential New York State Regents junior and senior high school for students with high-functioning autism and related conditions. The life skills she learned there, said her mother, were crucial. After three years at Westbrook, J’Aime was granted housing in Hampton Bays, where she now lives and works. She said she hopes to become a writer. 

If school districts between Southampton to Montauk are so uniquely successful in their ways of educating autistic children that they are the only ones on Long Island that do not require outside help, Mr. Barrowcliffe told the town board on Tuesday, “then they should roll their uniqueness westward and do away with the superfluous establishments that exist.”

Superintendents maintain that after the closure of the state-approved C.D.C.H. in 2016, adequate specialized services have been offered at the Suffolk County Board of Cooperative Educational Services learning center in Westhampton Beach. As there is no prekindergarten program at BOCES, children under 5 can attend Alternatives for Children in Southampton, a special-education center that offers an array of services, including day care, nursery, and prekindergarten programs, counseling, and music, speech, occupational, visual, and physical therapy.

Alex Kolevzon, M.D., the clinical director at the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai Hospital, offered his opinion via email with The Star, writing that the number of services offered is not the crux of the matter, but that the training of the educators is. “Autistic children have unique behavioral and learning needs,” he said, “and are most appropriately served in specialized education settings where staff and teachers are specifically trained to address their complex needs.” He does not endorse any particular school: “Applied behavorial analysis techniques have significant evidence to support their use and require specialized training to implement,” he wrote. Neither Alternatives nor BOCES offer ABA certified therapists, which is something the Gersh Academy does.

In the midst of this debate, Mr. Gersh, speaking from Seattle, where he is working with a school district to open an academy, asked, “We work with 55 districts on Long Island. How come the East End doesn’t want me? If I can help one autistic child there, why not let me?”

Ms. Winter replied, “He’s a private school. He’s out to make money.”

Mr. Gersh has told town officials that he is willing to personally fund the first $250,000 in school fees, which will be approximately $55,000 per year, per student, plus additional charges for various services. 

Several parents have pointed out that they are not pro Gersh Academy, per se, but feel it necessary to advocate for the creation of some specialized school option nearby. For easternmost families, a daily trip to BOCES in Westhampton Beach can mean a bus ride of almost two hours each way, or three to four hours round trip.

“Two hours on a bus when they could be receiving valuable services and therapy,” said Annmarie Zanchelli, a certified special education teacher who works with preschool special-needs children in the area.

Because of the lack of specialized services on the eastern end of the South Fork, Debora Oppenheimer, a Sagapponack mother of two adopted children with disabilities, said she has been cautioned against adopting another special-needs child. “It’s infuriating and offensive to hear the superintendents’ remarks,” she said.

The Supreme Court of Colorado ruled earlier this year in favor of the parents of an autistic teenager who claimed their son was not adequately educated by their public school system; the parents were reimbursed for the cost of his private education. On a federal level, the Colorado case is said to help clarify the scope of the Individuals With Disabilities Education Act by determining that it is not enough for school districts to get by with minimal instruction for special-needs children.

Genie Egerton-Warburton, the mother of a severely autistic 5-year-old boy, read a statement to the East Hampton Town Board at the Tuesday session. “It is every mother’s dream that her child is mainstreamed at some point in life,” she said. “But the reality is that proper special-needs education must be implemented from the beginning. I urge all the superintendents to search their souls and ask whether there is a societal, moral, and ethical imperative that we educate children on the spectrum in as complete a way as we educate typical children.”