Gersh Experience fosters independent living for autistic college students

At a few minutes before 5:30 p.m., Max Marguiles turns on his TV and sets it to stream music. The artist Skrillex's tunes blare from the speakers. In the kitchen of his apartment, he sets out the ingredients he will need for that night's dinner party and carefully begins to measure 4 cups of rice.

"I like a lot of rice," he said. "I can eat a whole cup myself, but I'm told that for five to six people you only need 4 cups."

Marguiles, 23, is checking off all the boxes of a good host -- setting the atmosphere, conscientious meal planning and meticulously timed preparation.

As guests begin to arrive, they gather around the kitchen island and watch Marguiles prepare the night's meal, or they take a seat on the couch and chat while they wait for food. It's a casual scene, but it has more significance for the group of young adults than any of them let on.

Marguiles and his five dinner party guests, ranging in age from 18 to 23, are in the inaugural class at Gersh Experience, a new independent living program in Patchogue for students on the autism spectrum. The parties put to use skills they learn in the program, including budgeting, organization, nutrition and cleanliness.

"The dinner parties are kind of a culmination of everything they learn," said Tristan Stegmaier, the program's director. "These are the subtle things that we take for granted that they get stuck on."

The first class of half a dozen students enrolled in the program about two months ago, in time for most of them to start classes at Suffolk County Community College in Selden. The Gersh Experience had been based in Buffalo, but founder and chief executive Kevin Gersh said Patchogue is a much better fit.

"It's like this brand-new, cool, hip area," said Gersh, 47, who lives in Huntington, where he was raised. "I like the energy of it; you can feel it."

Gersh has worked with children all his life, and quickly found he had a gift for it, he said. His father, Edward Gersh, owned West Hills Day Camp in Huntington, where Gersh helped out. Eventually, the two opened a Montessori preschool in Huntington that Gersh operated for a few years before starting a private school for students on the autism spectrum, who have varying disabilities associated with autism spectrum disorder. The National Institute of Mental Health characterizes the disorder as "persistent deficits in social communication and social interaction across multiple contexts; and restricted, repetitive patterns of behavior, interests, or activities."

Support after high school

More than 20 years later, Gersh Academy has multiple locations on Long Island, and its students range from kindergartners to 12th-graders. Gersh Experience is a continuation of Gersh's desire to provide services for those on the autism spectrum. The program was born out of the realization that many of Gersh's students, though able to complete high school, were failing out of college because they lacked the ability to live independently.

"What good is a high school diploma if he doesn't know how to bathe, cook and clean for himself?" Gersh said. "He's going to end up right back in mom and dad's basement."

Stegmaier said between 30 and 40 people initially applied and that he carefully selected the first round of participants. He said he was looking for students who were capable of attending college, willing to participate in life-skills classes and interested in improving.

They have "to want to be part of the program as much as, if not more than, their parents," Stegmaier said. He plans to add additional students before each college semester begins but will cap the program at 20 participants.

Parents pay $5,000 a month for their child's participation. The cost includes the apartment rental and program services, such as therapy and other counseling sessions. Most of the participants are eligible for social services funding, which can be applied to the program. Stegmaier also recommends that participants receive a weekly stipend of $150 for food, transportation and other personal costs.

Gersh said Patchogue -- which is chock-full of restaurants, services and public transportation options -- allows the students just what the program promises: independence. The students are paired with roommates. Five of them are enrolled at Suffolk County Community College; Marguiles is enrolled at Saint Joseph's College in North Patchogue. They all take the bus to their classes. If they want to travel to Manhattan or beyond, they take the Long Island Rail Road. For almost anything else, they can just walk.

Patchogue as hub

Stegmaier said the program rented apartments at New Village, whose other occupants are not in the program, in part because of the complex's location in the center of town. When not in class, the students adhere to a schedule at the Gersh Experience office on Patchogue's West Main Street, where they receive mental health counseling, tutoring and life-skills classes like money management and household care.

They receive weekly visits to check on the cleanliness of their apartments, and a resident adviser who lives in the building is on call for daily needs and also organizes activities in their apartments and the community. Recently, they volunteered at an animal shelter and attended Alive After Five, an outdoor festival that takes place throughout the summer in Patchogue.

How long they stay in the program is up to the students and their parents, Stegmaier said, adding that the goal is for students to be able to live independently after about two years.

"Most of them have experience living on their own," said Stegmaier, who was special education director at a public school in California before coming to Gersh Academy in August 2014 and then Gersh Experience. "They are very capable kids, but they need guidance."

'Offering the full kit'

Scout Underberg-Davis, 18, of Belle Mead, New Jersey, graduated from boarding school last year and was accepted to Vassar College in Poughkeepsie for next fall. In the interim, Underberg-Davis, who does not identify with a specific gender, is taking advantage of Gersh Experience to prepare for living alone in college and cites menu planning and money management as the most useful lessons at Gersh.

"I feel like I need more time to get better at being like a more normal human being -- whatever that means," Underberg-Davis said jokingly.

The biggest change from being either at home or at boarding school is the amount of responsibility, Underberg-Davis said, adding that "having to be entirely in charge of my own food -- that's a lot of responsibility."

Other members of the program have already been away to college. Marguiles spent four years at Lynn University in Boca Raton, Florida, which had a support program for students with special needs, but it wasn't enough, said his mother, Donna Sirlan of Manhattan. Marguiles said the services were available, but he didn't really use them.

Sirlan said Marguiles "hit a wall" in his fourth year. He failed out of his classes, became very isolated and lost a lot of weight, she said.

"There was no choice but to bring him home," Sirlan said. "As a parent that's very scary when you start to research what to do next. For these kids on the spectrum, there's not a lot out there."

Sirlan said that after exhaustive research into options for her son, she heard about Gersh Experience from a friend and inquired. She said she was impressed by how comprehensive the services were and thought it sounded like a good fit. The program is a blessing, she said.

"They are offering everything that adolescents would need to be successful, to shine, to be the very best they can be," Sirlan said. "And they are offering the full kit in the most beautiful way."

Mutual support

When her son moved into the apartment, Sirlan said, she took him and the other participants out to dinner at a restaurant in town. There, she said one of the students struggled to understand the menu. Another student quickly came to help.

She said that sense of community and support will go a long way.

"They aren't secluded," Sirlan said. "They are getting all these new tools and going out to the world at the very same time and using them every day."

Jeremy Schwartz, 21, of Syosset, also tried going away to school before moving back home and then joining the Gersh Experience. Schwartz, who is Marguiles' roommate, said at college he struggled with "certain complications," like balancing his schoolwork and dealing with peer pressure.

At Gersh, he said the staff is helpful and knowledgeable; and recently, he was happy about the chance to resume his favorite hobby: collecting celebrity autographs. Schwartz waited outside the stage door at the Patchogue Theatre for the Performing Arts when the Bacon Brothers played there last month and got his third Kevin Bacon signature.

Schwartz said he recently experienced a first with the Gersh program -- he paid a utility bill. Members of the staff helped him schedule payments for other bills and write out a check.

"That felt good, very good," Schwartz said. "It's just about time I finally did it."

HELP FOR FAMILIES

Resources for parents of children on the autism spectrum:

* GERSH EXPERIENCE, gershexperience.com, info@gershexperience.com; 631-385-3342

* NASSAU-SUFFOLK SERVICES FOR AUTISM focuses on education and treatment. www.nssa.net

* PARENT TO PARENT OF NEW YORK STATE This statewide nonprofit organization offers support and connects families of children with autism and other special needs. The Long Island regional office is in Hauppauge. parenttoparentnys.org

* OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES The state agency is the starting point for accessing government services for people with disabilities, and autism as well. In addition to connecting families to appropriate resources, the agency also provides state-funded family support services and employment support. opwdd.ny.gov

* AUTISMLINK, based in Pittsburgh, is also associated with the Autism Center of Pittsburgh, which provides evaluations and referrals. autismlink.com

*AUTISM SPEAKS, founded in 2005, is also dedicated to funding research to find a cure for autism. autismspeaks.org