A Chance on an Idea

Cultivating the seeds of impact can take time–but the result can change the world.

When Jo Ann Simons discovered her son, Jon, had Down syndrome she did what came naturally: she took action. But in the late ’70s, the support network for individuals with developmental disabilities was essentially limited to pockets of families, meeting around kitchen tables. Those were the days when institutionalization was falling out of favor. For Jo Ann and others like her, that was not an option.

“The default recommendation from many doctors was institutionalization,” she says. “I wanted an inclusive life for him and a life in our family and in our community.”

Her push eventually brought her to the Northeast Arc in a United Way-funded position as Director of Advocacy in 1981. By the time Jo Ann arrived, the resistance to an institution-first approach was a nascent movement–but one that she believed in stridently. In her new role she was able work the front lines of this cultural shift, pushing social policy change, family support programs, early intervention and community-based services.

“Those families were brave and courageous,” she says. “I like courageous.”

She stayed at the Arc until 1988, as her position–funded still by United Way–turned into Director of Community Programs, an indication of how much change had happened in such a short period of time. Her career came full circle on November 2015, when she returned to the Northeast Arc as the CEO. Seeing where the family support program began and where it is now has been, according to her, “astounding.”

“We now have proved the efficacy of early intervention,” she says. “We’ve been able to demonstrate clearly the advantage of working with children early on. Today, third party insurance companies are paying for services, which was unheard of in 1981.”

She is quick to ascribe much of the credit for these enormous successes to United Way’s forward-thinking support.

“Supporting parent groups, education, advocacy, referrals, those were United Way-funded in the early days,” she says. “Now the state is funding those things.”

She sees the cultural sea change in her own life as well. Her son is now almost 37, living on his own, gainfully employed, completely part of the community. This was not a sure bet in 1981. It fell to crusaders like Jo Ann and her Arc colleagues and especially the activist parents who preceded her, unwilling to compromise on the opportunity for their children to have good lives, to bring about this reality. And it fell to seed-planting way back when from organizations like United Way, which shared a vision with this unruly bunch.

“United Way took a chance on an idea,” Jo Ann says. “That if we had strong families, we’d have better outcomes for children. Sometimes we need to wait and be patient to see the result.”