Director for Kids with Disabilities

As a child, she observed that her nonverbal sister needed special help beyond what their family could provide. As an adult, she enlisted another sister to help families find community resources to help care for their differently abled children. 

FAMILY BACKGROUND

Karly Forman Cohen (KC), age 29 (when this story was written in late 2023) is one of three daughters, including Sydney, age 27 and Lindsay. Sydney was born nonverbal. 

Their father owns stores selling clothing. Their mother was a speech and language pathologist who retired after Sydney was born in order to focus on her youngest daughter’s needs. 

CHILDHOOD

“Basically, my childhood was defined by being part of a community of people who had children with special needs,” KC has said. 

“Growing up (on the New Jersey side of suburban Philadelphia), I was super close to Sydney. I was conscious of how some people stared at her, and I saw how difficult it could be for my parents to get her the services that she needed.”

EDUCATION

Following high school and earning a Bachelor’s degree in college, FC achieved a Master’s degree in nonprofit leadership from the University of Pennsylvania. 

BEFORE STARTING A NEW BUSINESS, DO ‘DUE DILIGENCE’

KC and her oldest sibling, Lindsay, inspired to help families provide care for their children who are ‘differently abled’ decided to form a non-profit business, “Raise the Bar” (RTB) which they named to honor their mother, who said, “I always encouraged Sydney’s teachers to challenge her. So, I kept saying ‘You need to raise the bar!’ A lot of people make assumptions about Sydney and her peers. They think that because she doesn’t talk, she doesn’t understand. But she does understand.”

Despite her professional connections in the human services world, the mother said that dealing with the array of public and private agencies involved in the lives of children who are differently abled, was daunting. 

“You have to fight for what your child is entitled to,” she said. “Each case is highly individual, but sometimes there is a cookbook response. And what about the families that don’t have the same resources that ours does.”

Having a clear vision of what she wanted to do, KC conducted a needs assessment among families she hoped to serve. She said the process was essential. 

Along with a former intern who has since become RTB’s director of programs and operations, KC distributed surveys, set up focus groups, and met with representatives of other nonprofits that work with young people in Camden (NJ) city to detect gaps in services for kids with disabilities. 

“There are a lot of organizations doing good work, but often they’re in the suburbs, and people in the city can have transportation issues,” said FC. “Under-resourced communities can have less awareness of what is available for young people with special needs – especially as they age out of the school system. Helping parents obtain guardianship over a child who has become a young adult is a big part of what we do,” said KC. 

What many city parents said they most wish for is for their kids to have more social opportunities with their peers. 

The mother of a child, age 20, with Down syndrome, said “My daughter was moved through seven schools in five years. She came to me once and said, ‘Mommy, I don’t have any friends’ because every time they switched her to another school, she didn’t know anybody. But with Raise the Bar, now she has friends – a best friend named Malik.”

At a party to celebrate the first anniversary of the founding of RTB, there were board games, pop music, a group exercise about superheroes and plenty of before-dinner conversation. Assisted by several parents and program volunteers, the kids were kept off their phones and engaged with their peers.

An adult parent, laborer by trade, brought his son, age 15, who has autism. Said the father, “He’s a little shy, and this helps him to socialize, to open up and talk.” In a brief interview, the boy said he was enjoying himself and likes meeting others like himself.

Noted the father, “Sometimes it’s a challenge for him to be around other people, but we tell him, ‘Just be calm,’ The program is beautiful. It’s great to see these kids happy. And it helps the parents to understand autism, which is a different world.”

CHALLENGE – RAISING MONEY TO SUPPORT SERVICES TO BE PROVIDED

Editor – While ‘GoFundMe” and other ‘crowd-sourcing’ efforts may be helpful on a short-term basis, a charitable organization which hopes to provide services to assist others, increasingly expanding the number of people to be served and remaining in business for a long time, needs sources of revenue beyond a few generous individuals willing to write an occasional check from their family bank account.  

Where large and hopefully continuous donations will be sought, the nonprofit organization must create a proposed budget of expenses and offsetting income, apply for – and obtain – tax exempt status from the IRS and then apply to foundations and the charitable divisions of large corporations for grants. 

The news article upon which this story is based did not mention funding applications and presumed successes. The editor will contact Raise the Bar and hope to supplement that aspect of this story.

CHALLENGE – FEELING LIKE AN OUTSIDER WHILE LEADING A NEW BUSINESS

“There is so much good energy in Camden, and so many people working to make it a better place,” said KC. “I’m an outsider, and I try to be super mindful of that. I try to lead from a place of respect, and meet people where they are, and be extremely open with everyone. And I listen. Because I don’t have all the answers.”

CAREER SATISFACTION

“Overseeing what is essentially a start-up that serves a frequently marginalized population in an under resourced city is much harder than I ever imagined,” said KC. “But so far, it’s going incredibly well.” 

Said Sydney’s dad about his daughter who founded the non-profit: “KC is very organized. She’s done her homework and networking, to help people, including people on low incomes, or single mothers. She’s a resource center. And I’m a proud father.”

“Raise the Bar is a great example of how when someone sees a need and has passion to do it, they can really make an impact,” said the executive director of a high-tech skills training program for young people in the city of Camden.

KC’s mother noted, “We’re incredibly proud of KC for going out there, following her passion, making her dream happen – and helping so many other people.”

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This career story is based on a news article written by Kevin Riordan, published by The Philadelphia Inquirer on October 23, 2023