1. Osterlund, Hob MS, RN, CHTP

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Before Connie Hill, MSN, RN, was the nursing director of a busy pediatric unit at Children's Memorial Hospital (CMH) in Chicago and a community advocate leader for children with complex medical needs, she was a patient.

FIGURE. Connie Hill ... - Click to enlarge in new windowFIGURE. Connie Hill with one of her many young patients at Children's Memorial Hospital in Chicago. "We used to have ventilated children stay for more than a year, and now many are discharged after four months and aren't readmitted as quickly," she says.

As a child, she had febrile seizures that resulted in multiple hospitalizations, and she still remembers the lonely, terrifying nights. On the last of those admissions, a certified nursing assistant named Cora changed her experience.


"She talked with me, read to me, calmed me down," Hill says.


The memory stayed with her, and she pursued a nursing career. After graduating with a bachelor's degree in nursing from the University of St. Francis in Joliet, Illinois, in 1991, she worked as a staff nurse at CMH and in 1996 became clinical manager of the pulmonary-allergy-transitional care unit. She recently earned a master's degree in education and community health from Olivet Nazarene University in Bourbonnais, Illinois.


Hill became director of the 34-bed unit in 2002, shortly before the staff was asked to help the discharge process for children with numerous medical needs.


"At first we thought we just needed to improve education," she says. "We didn't realize all the barriers families faced."


Children with complex medical needs may have severe brain injuries, genetic disorders, or developmental delays. Children who have or are at risk for chronic, physical, behavioral, developmental, or emotional conditions require a great deal of community assistance. As neonatal intensive care unit technology improves, more children are requiring life-sustaining support, extensive treatments, and lifelong medications. Some of these children are born to teenage parents, to parents without insurance, or to immigrants who don't speak English-all factors that can complicate discharge planning.


It became clear to Hill and her colleagues that the problems needed to be addressed from a systems perspective.


"We had a dream to invite all the community and regulatory agencies to see what we could do," she says. After much work, the Consortium for Children with Complex Medical Needs was created, involving more than 100 representatives from 30 Chicago-area public and private agencies.


"We asked ourselves, Who are these kids? What are the barriers to their care? How soon are they readmitted? What kind of support do they have in the community?"


Families were confused and overwhelmed.


"Chicago is the country's third largest city, yet once we did unravel the resources, we found there to be very little for the parents," Hill says.


The consortium witnessed other dilemmas, such as children whose parents are not U.S. citizens. "They come to the emergency room, and we take the baby. Then the situation becomes a question of life-sustaining technology that may not be continued in the community," Hill says. So the consortium began to strategize.


"Within that first year we created action teams that foster partnerships, lobby for policy change, and promote communication between families and professionals," Hill says. She explains that they're establishing a standard for care of children with complex medical needs by caring for families through networking, education, and advocacy.


"We used to have ventilated children stay for more than a year, and now many are discharged after four months and aren't readmitted as quickly," she says. "We know who to call to get a waiver, to get support. We have a collaborative approach rather than a competitive one."


CMH has its own team to look at these concerns.


"We saw an 18-year-old mom whose child had a hemorrhage at birth, has a tracheotomy, a G-tube and is developmentally delayed," Hill says. "She's doing the best she can, but she has very little life experience."


The consortium hopes to make life a little easier for such families. It is seeking funding to hire someone as a full-time consortium leader and to build on its own success. Hill says none of the progress would have been possible without her colleague Joyce Chesniak, BSN, RN, case manager for CMH. Hill says Chesniak is a "phenomenal advocate for these kids."


Hill has not forgotten her own advocate. When she was a nursing student, Hill ran into Cora, the nursing assistant from her childhood, at CMH.


"I told her 'You don't know this, but you were the main reason I decided to pursue nursing,'" Hill says. "Cora just smiled."