JUDY & JOSH’S STORY

“We’re making a difference, really creating change for adults with complex disabilities. We’re ensuring they’re not forgotten.”

When Judy Cohen first got involved with United Way’s 21 and Able initiative in 2012, her son Josh was preparing to graduate from school. With complex medical issues, including cerebral palsy and seizure disorder among others, Judy was determined to find ways that Josh and his classmates would not ‘graduate to the couch,’ as was standard for young adults with disabilities ‘aging out’ of the system at age 21.

“Josh has lots of complicated issues,” Judy explained, “so I became involved in the work to ensure that adults with complex needs become a part of United Way’s advocacy work. If we can serve those with the most complex needs, we can help others.”

Judy has become a powerful voice in Harrisburg, collaborating with leaders, providers, legislators and other parents along with the United Way team. “I am really proud of the work we’re doing. Much of our focus has been around the final rule for Home and Community-Based Settings, ensuring that people with complex disabilities are not left out of the conversation as day programs close or are modified to comply with the law.”

“Given all of Josh’s multiple medical needs,” Judy adds, “it would be easy to keep him at home. His care is very complex and things could go wrong. But that would not be a life for him. He wants to be out and part of the community. So we have to be open to taking risks, letting go, advocating.”

Judy’s work on behalf of Josh and his friends can be summed up in her son’s own words, spoken using the Dynavox assistive device: “Let me be out there. Let me have a life.”