Director of Midwest's Only Adult Down Syndrome Clinic Honored

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         Moya Peterson, Ph.D., ARNP, clinical associate professor at the University of Kansas School of Nursing, has been named the recipient of the 2018 Lillian Carter Exemplary Acts in Nursing Award, one of three Excellence in Nursing Awards sponsored by Modern Healthcare. Named after President Jimmy Carter’s mother, this award honors a nurse or nursing program that has engaged in extraordinary acts of providing healthcare in areas of special need.

Peterson was nominated for her work directing the Adults with Down Syndrome Specialty Clinic in the Department of Family Medicine at the University of Kansas Medical Center. Peterson, who has a joint appointment in Family Medicine, founded the nurse-run clinic in 2009, in response to a growing need for coordinated primary health care for adults with Down syndrome, a genetic disorder that causes developmental delays and physical abnormalities. Specialty clinics already existed for children with the disorder, but because the life expectancy for people with Down syndrome has increased dramatically--from age 26 in 1951 to age 61 today--there are very few for adults.

Nearly a decade later, the clinic Peterson founded is, apart from a Chicago clinic that serves only patients in Illinois, the only clinic for adults with Down syndrome in the Midwest. And it is the only one that was created and directed by a nurse practitioner. “The Adults with Down Syndrome Clinic is an outstanding example of one person’s commitment to making a difference,” wrote Bob Page, President and Chief Executive Officer of the University of Kansas Health System, in a letter nominating Peterson for the award.

Peterson says she would love to see the clinic expand into a center, offering services beyond standard primary health care. “I’d like to have people who could talk to the adults about social needs, about employment. My older patients are survivors. Their parents had to fight for them; they were told their baby was going to be a burden; they had to fight to get them into the school system, let alone housing and employment” she said. “But it’s different now. This is a new phenomenon. We need to be concerned about these patients and figure out their needs and how we can assist them.”

The video includes sound with Dr. Peterson explaining why the clinic is necessary, the scope of services offered and what makes this clinic different from anything in the region.