SWAMPSCOTT — When Jo Ann Simons welcomed her son into the world nearly 40 years ago, he completely changed her life. Her son, Jonathan Derr, was born with Down syndrome, a diagnosis that has served as the inspiration for her life’s work.
“When he was born, the world that I imagined for him didn’t exist,” Simons said. “It wasn’t inclusive and welcoming and I had to decide in the first days of his life that in order to save his life and save my life, I was going to have to somehow make this my life’s work and that it wouldn’t be enough to just improve Jonathan’s life, that I needed to bring up the entire group of people with intellectual disabilities along with him.
“It’s been very exciting,” Simons continued. “He’s 39 and I’ve seen enormous progress. The opportunities and acceptance for people with disabilities increases every day.”
Simons, a Swampscott resident, is the CEO and president of Northeast Arc, an organization that helps people with disabilities become full participants in the communities north of Boston while also providing support for their families.
The Danvers-based nonprofit, which has an operating budget of $280 million and supports 10,000 people in the Northeast region, primarily focuses on intellectual and developmental disabilities and autism.
For her long-standing efforts of giving back to her community through her work, Simons, 65, has been named Swampscott’s “Person of the Year.”
“I was surprised and honored,” Simons said of the recognition. “It’s exciting when you’re recognized and believe it or not, it’s sometimes more exciting when you’re recognized in your own community because oftentimes, you’re just that local person in the eyes of your community where you might have greater recognition outside of it.”
When Simons was named CEO and president of Northeast Arc two years ago, she said it was like coming full circle. She worked for the nonprofit in the 1980s for eight years establishing the family support division and then went on to work in state government and hold two CEO roles for two other organizations, Communitas and Cardinal Cushing Centers, which work with children and adults with disabilities.
What drew her back, she said, was that she felt it was a terrific organization and she didn’t want anyone else to have the job.
Simons said Northeast Arc was started more than 64 years ago by similar families who came before her and recognized there no opportunities for their children, except to stay in institutions. That lack of opportunity prompted them to start a grassroots organization, which included a nursery school and offered job training programs as an alternative to institutions.
“Children with disabilities at that point were hidden away,” Simons said. “They didn’t have the right to go to school. They didn’t have a right to early intervention so these brave, courageous families formed what became the Northeast Arc.”
Over the years, Simons said there have been enormous strides for children and adults with developmental and intellectual disabilities. She said there have been people with disabilities, including Down syndrome, who go on to be actors in television and movies.
They have gone on to be employed in all industries and sectors in the workforce. She’s seen them graduate from high school and college, get their driver’s licenses, get married and get divorced.
Northeast Arc offers several employment opportunities for its clients, but also works to get them placed in jobs in their communities. The nonprofit has worked with the city of Peabody to open both a coffee shop, Breaking Grounds Cafe, and the Black Box Theater, both of which were identified as needs in the city, according to Simons.
At the coffee shop, Northeast Arc is training people with intellectual disabilities for careers in food service. The Black Box Theater has a theater program for teens on the autism spectrum called Spotlight, and is another place that the nonprofit views as an employment setting.
Simons highlighted the nonprofit’s Arc Tank, which is similar to the television’s “Shark Tank” and aims to change lives through innovation. In its second year, Simons said Arc Tank 2.0 gave away $200,000 in a competition of proposals that will positively disrupt the way services for people with disabilities are delivered.
As for her son’s accomplishments, he received a certificate from Cape Cod Community College and lives by himself. He supports himself by working two jobs and lives a meaningful and productive life. Derr has a career in Special Olympics and plays golf, basketball and track and field.
But she said those are all wins that had to be fought for. Simons said she had to fight to get her son into daycare and later into camps. She had to convince youth athletic teams that he should be part of their leagues like every other child.
When Derr was 11 years old and playing Little League, she remembers her husband, Chet Derr, being approached by another father who remarked that their son should be in a challenger league instead. But Simons said Derr was where he should have been at the time, alongside the other athletes.
“People are no longer hidden away,” Simons said. “I think the inclusion of people with disabilities has led to the inclusion of a lot of other groups of folks who have also suffered from civil rights issues. I think that people with disabilities have had success that has opened the doors other groups have been able to walk through.
“I’m proud that if a family like I was almost 40 years ago found out that they had a child with Down syndrome, they could call the Northeast Arc and know that they found a community that would be there on that day and every day forward.”
Simons lives in Swampscott with her husband of 41 years. The couple also has a daughter, Emily Derr, 35, and two grandchildren. She is a Wheaton College graduate and has a master’s degree in social work from the University of Connecticut.
