Providing Down syndrome patients with a bridge to independence

Clinical associate professor

University of Kansas School of Nursing

Kansas City, Kan.

During one of her last clinical rotations as an undergraduate, Moya Peterson met one patient who determined the future of her medical career.

“It was a man in his mid-20s and he had Down syndrome,” Peterson recalled. “He was the first person I had ever met with Down syndrome, and I just fell in love with him.”

Peterson holds a Ph.D. in nursing and is a credentialed pediatric and family nurse practitioner.

When deciding what topic to focus on for her dissertation, Peterson chose Down syndrome, specifically the lack of care available once a patient ages out of the pediatric ward.

“Up until about a decade or two ago, patients weren't living much longer outside of their pediatric years,” she said. “But now the average life span is 61 years old, so parents and caregivers were stepping off the sure ground of pediatrics into an area of the unknown. We are not sure yet about how to care for an adult and what services they need and will need in the future. We learn every day.”

Peterson sought to help those facing that dilemma, and the nurse-led Adults with Down Syndrome Specialty Clinic was born in 2010 at the University of Kansas Medical Center. The center, where she is director, is a home where families and patients can cultivate an ongoing relationship with a personal healthcare provider to establish comprehensive and continuous care. “I enjoy helping people who don't have a lot of support. I care for a lot of adults with disabilities. Down syndrome is where I have the most passion. The parents are just desperate for someone who understands and is willing to work with them," she said.

What excites Peterson most is helping foster change that enables aging Down syndrome patients to live full, independent lives with spouses and jobs. “The people that I see now that are in their 50s, those parents fought for everything; they fought to get them in the school system, to get into classes, to get somewhere to live,” she said. “The kids who are now in their teens and 20s, they have these things now. Life is looking up for them, their lifespan is increasing, and it's a great thing to watch and be part of."

Peterson has received several small grants from the organization First Downs for Down in Kansas City and is a sought-after speaker and expert on adults with Down syndrome in the Midwest. But her first love will always be the patients.

“The best part of my job is I get lots of hugs.” Peterson said. “I get the best hugs, and it's worth everything that I do.”