Joshua Shusterman wants the same thing most recent college graduates seek: a good job, independence from his parents and a meaningful romantic relationship.
Finding all of those things can be a tall order for any 23-year-old. But Shusterman, who grew up in Merion Station, knows that he faces additional challenges because of his cerebral palsy. The condition affects Shusterman’s body movement and peripheral vision; it also sometimes causes seizures.
“I don’t count myself as a person with CP, I count myself like everybody else,” Shusterman said during a recent interview at the Narberth apartment he shares with a roommate. “It stinks sometimes that I have seizures, but it is what it is. I am a person who doesn’t like to quit.”
Shusterman is trying to turn his goals into realities with the help of the Philadelphia Independence Network. He’s one of 16 members participating in the program, now in its third year, run by JEVS Human Services. PIN, as the Narberth-based program is known, provides a supportive community for young adults with a wide array of special needs to live independently and develop career skills.
Roughly half of the PIN members are Jewish, according to JEVS. The private nonprofit human services organization, formerly known as the Jewish Employment and Vocational Services, has an annual budget of $57 million. It gets the bulk of its funding from the government and helps people of all ethnic backgrounds.
The PIN members have a wide range of educational experiences and special needs. Shusterman, for instance, became a Bar Mitzvah at Adath Israel and graduated from Lower Merion High School and Beacon College, a Florida school for students with special needs. Some of his fellow PIN members went to private schools that serve special needs students and didn’t attend college.
The new program was created to fill a void, according to several parents and officials involved. There was a dearth of options for disabled adults who, in most respects, function quite well but need a limited degree of help to live apart from their parents, they said. Several Main Line families approached JEVS about creating something from scratch. The Shustermans learned of the program after it had been around for a year.
“Every parent really worries about where their kid is going to end up. You worry about every kid, but when you have a child with special needs, you worry more,” said Hermine Stein Shusterman, a doctor with a family practice.
While JEVS officials started out looking at existing programs, what they came up with was different from everything else out there, said Jay Spector, the agency’s president and CEO.
Participants, for the most part, live in private housing in the Narberth area. Even though many of them can drive, the Main Line borough was chosen because of its walkability, access to public transportation and relatively large supply of apartment units.
PIN members can call a JEVS staff member 24 hours a day if they need help, receive periodic home visits and regularly go to the Narbeth PIN clubhouse for job skills training and social events. Participants are required to volunteer somewhere, have a job or be looking for work.
“I challenge them and push them, where it is uncomfortable, and they push back sometimes,” said Marnisha Henry, who directs the program and is writing a dissertation about its participants for her Ph.D. program. “I am a strong advocate for them, always pushing their point of view.”
Henry noted that she leads discussions on all kinds of topics and has been known to offer advice on dating and other personal matters. For example, she said she’s not afraid to tell participants something their parents might not, like, “Stop buttoning your shirt up all the way like that — it’s not cool, you don’t want to be uncool.”
It’s all part of the process of focusing on their abilities and learning to manage their disabilities, she said.
While many JEVS programs are government funded, PIN is not. That means that parents or participants must pay the cost, about $7,500 a year, in addition to housing.
Spector acknowledged that PIN is cost-prohibitive for many families, but he said that one advantage of it not being a government initiative is that JEVS can tailor it to meet families’ needs rather than adhere to guidelines that are geared to “one size fits all.” He also said the agency is looking for ways to expand the program to make it more economically feasible for lower middle class and poor families.
Linda Roth’s 22-year-old daughter Stephanie was one of the first to join PIN.
“We were thinking that we were growing older,” said Linda Roth, who lives in Dresher and directs the Jewish Information and Referral Service of the Jewish Federation of Greater Philadelphia. “We were concerned about Steph living independently and learning skills to survive without us.”
Like many PIN members, Stephanie Roth is on the autism spectrum. She reads voraciously — she brought Jane Austen’s Sense and Sensibility to a recent interview — but decided after a brief stint at college that it wasn’t for her, at least for now. Roth also loves to work with her hands and recently completed a vocational course in building at the Orleans Technical Institute, a trade school JEVS runs in Northeast Philadelphia. She just started a job on the maintenance staff of Campus Apartments in University City.
“We are just like everyone else. We just have some slight difficulties that other people just don’t have to deal with,” said Roth, who became a Bat Mitzvah at Temple Sinai in Dresher and currently is looking for a new place to live in Narberth.
She’s made a number of close friends through PIN and even formed a Dungeons & Dragons club with other members. But she envisions a day when she won’t need anyone’s assistance.
“Even though PIN is a great program, I hope that I can grow past it and live without it,” she said.
For his part, Shusterman had been searching for a job for months and said he was getting discouraged at the process. But he was recently offered a customer service position at the Philadelphia International Airport and is waiting to begin training.
“If PIN did not exist, I would still be at my mom’s house,” Shusterman said. Still, he noted, his goal is to “just find independence.”
His mother said she shares her son’s dreams.
“I need to know you can live independently without support,” Stein Shusterman told him, “without a Marnisha to call.”