Retro Riley: Advocate was the first parent liaison on the NICU

Riley 100 |

03/21/2024

Special Kids Can’t Wait Coalition

Linda Hankins, whose son was born with Down syndrome, championed the role of parents in their children’s medical care.

Linda Hankins is a Riley Hospital for Children parent who helped change the world. She was Riley Hospital’s first parent liaison on the Newborn Intensive Care Unit in 1988. She laid the foundation for others who followed, all contributing to the important role today that parents play side-by-side with Riley Hospital medical staff caring for their children.

Hankins’ son, David, now 43, was born in 1981 with Down syndrome. “When David was born, I had no place to go for help and support and didn’t know who to ask my questions about the care of my son,” she remembers. She began her career as an advocate by being a vocal member of the Special Kids Can’t Wait Coalition. As a coalition member, she worked with many statewide organizations to advocate for legislation in Indiana to establish First Steps, an early intervention program for infants and toddlers. (David is pictured sitting on Gov. Evan Bayh’s lap at the signing.)

As a parent of a child with special needs, Hankins (second from right) galvanized other parents and advocates who shared the same drive and conviction that a statewide network for families of children with special needs was needed. She then joined with another Riley parent, Donna Gore Olsen, and together, they partnered with Riley Hospital social worker Dr. Lann Thompson and Dr. Gary Collings, a special education administrator, to establish the Indiana Parent Information Network (IPIN) in 1987. IPIN, later called About Special Kids (ASK) and now Indiana Family to Family, is a statewide support network staffed by parents of children with special needs who help answer questions and identify resources for other parents. Hankins served IPIN in many roles, including board president and treasurer, for many years.

Linda Hankins Retro Riley

As the hospital’s first parent liaison on the NICU, she invented what a parent liaison does to help families and medical staff connect, communicate and care for a child with disabilities. Parent liaisons are a normal part of the staffing on Riley Hospital’s NICU, supporting parents and medical staff to assure the delivery of family-centered care.

“Linda helped to normalize the role of parents contributing to and talking with medical staff about the care needs of their child on the NICU,” recalled neonatologist Dr. James A. Lemons. Likewise, Dr. William A. Engle recognized Hankins as “a special person, advocate and leader in our community.”

Through her pioneering work on the NICU, she listened to and guided parents to information and resources and became a part of care conferences as a support to parents. She was followed in that role by Sharon Dodson and Susan Sears.

Hankins wore many other hats during her tenure at Riley Hospital, including coordinator for the Preschool Assistance Project in Developmental Pediatrics; original team member for Indiana’s statewide coordinated system of early intervention training led by the Indiana Family and Social Services Administration; and assistant director of Community Education and Child Advocacy, through which she was one of the co-founders of the Safety Store and also represented the hospital on the National Council on Child Advocacy. She also chaired the Public Policy Committee for the Children’s Coalition of Indiana.

She was recognized by many organizations for her leadership and contributions, including the 2012 Distinguished Leadership Award from the Indiana Governor’s Council for People with Disabilities and the 2004 Glenn R. Irwin Experience Excellence Award from IUPUI.

--Compiled by the Riley Hospital Historic Preservation Committee; photos provided by Riley Children’s Health and Office of Indiana Gov. Evan Bayh