F
or Dee and her son Jonah, self-direction has been nothing short of life changing. Jonah entered adolescence during the uncertainty of the COVID-19 pandemic, a time when his behaviors became increasingly intense and unpredictable. At just 13 years old, Jonah experienced significant challenges with sleep, safety, and regulation, making everyday life at home and in the community extremely difficult. Self-direction made it possible for Dee to keep Jonah at home, supported, and surrounded by people who know and care for him.
Before self-direction, community outings were rare and often overwhelming. Jonah’s behaviors, combined with limited support options, meant that many experiences simply felt out of reach. Today, with a carefully built self-directed team, Jonah is doing things that once felt impossible. He attends religious services and loves being part of that community. He has gone snow tubing, visited places like Hershey Park, attended camp, and explored the world around him in ways that bring him true joy. “He loves being part of the community,” Dee shared. “And now, he gets to be.”
Jonah’s self-directed team includes more than ten trusted support staff, each with a specific role. Some assist during the school week by helping Jonah get to therapies and appointments, while also providing companionship and behavioral support. Others provide overnight care when Dee needs time away, ensuring Jonah’s safety and routines are maintained. For larger community outings, Dee is able to bring in additional support, which allows her to experience these moments simply as a mom. “I got to sit next to him on a ride at Hershey Park,” she recalled. “I wasn’t staff. I was just his mom, enjoying that moment with
him.”
Self-direction has also supported Jonah’s growth at home. His team helps him engage in a variety of activities beyond screen time, including puzzles, books, felt board stories, games, and outings like drives and library visits. These experiences help build independence, expand his interests, and introduce structure in ways that work for Jonah. His communication has grown as well. While his speech can be difficult to understand, Jonah is more verbal and more social than ever before, blossoming in an environment where he feels safe and understood.
For Dee, self-direction has provided something equally important: peace of mind. After years of caring for multiple family members, including her husband, daughter, and mother, self-direction has made it possible for her to travel, rest, and take time for herself while knowing Jonah is safe and well cared for. She recently spent weeks away, something she never could have imagined before. “I didn’t have to worry,” she said. “I know the people who care for him.” Looking ahead, Dee dreams of a future where Jonah can live in his own apartment with a live-in caregiver, remain active in the community, and one day have meaningful work that allows him to connect with people, something he naturally loves.
At its core, Dee believes self-direction is about the right to belong. “Without it, Jonah would be in an institution,” she said plainly. “Self-direction keeps him in the community, with family, with people who care about him.”
Jonah’s story is a powerful reminder that with the right supports, individuals and families can build lives rooted in safety, dignity, and connection.