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Tackling a life-long medical journey inch by NICH

NICH program
Taylor Jennison, 17, chats with Ingrid Gomez (center) as Taylor gets a pedicure at Zen Nails in Portland, June 13, 2017. Jennison participates in the Novel Interventions in Children’s Healthcare, or NICH program, which aims to improve the health and care of youth whose medical needs are compounded by social problems. (OHSU/Kristyna Wentz-Graff)

At age 4, Taylor Jennison was diagnosed with type 1 diabetes, an incurable medical condition in which the body doesn’t produce insulin, the hormone necessary to help move glucose from the bloodstream to the body’s cells. The diagnosis meant following a daily routine of insulin injections and food and sugar intake monitoring, a process that interrupted so many of the joys of childhood.

For Taylor’s mom, Kristene Jennison, the process was all too familiar. Taylor was the second of her children to be diagnosed with the life-long condition. With two young children in need of constant supervision, Kristene, a single parent at the time, had to forego her education and work opportunities, which put a financial strain on the family.

There was little to look forward to in terms of family vacations, extravagant holidays or spontaneous splurges. As the years went on, Taylor learned to cope with her condition, but, the reality of living with type 1 diabetes remained daunting.

“She would feel so defeated when she’d follow her self-care routine perfectly, yet her blood sugar levels would still not be where they needed to be,” said Kristene of her now 17-year-old daughter.

This frustration, combined with the typical teenage stressors, caused Taylor to enter a deep depression that required multiple hospitalizations.

“As a parent, it is incredibly hard to watch your child struggle in this way, and it caused tension in our relationship. They say it takes a village to raise a child. It was clear that we needed to find ours in order to get back on the right track,” said Kristene.

NICH program
Ingrid Gomez is an interventionist in the Novel Interventions in Children’s Healthcare, or NICH program. She is available 24-7 to help her clients manage their health. (OHSU/Kristyna Wentz-Graff)

For Kristene and Taylor, this village came in the form of a program called Novel Interventions in Children’s Healthcare, or NICH. Developed in 2011 by Michael A. Harris, Ph.D., and Kim Spiro, Ph. D., with the Institute on Development and Disability and the Department of Pediatrics in the OHSU School of Medicine, NICH is a first-of-its-kind collaboration between the hospital and regional insurance providers that works to improve care, reduce costs and advance health for youth whose medical needs are compounded by social problems.

“Simply put, NICH’s community-based interventions aim to identify and remove the barriers between children, families and better health,” said Harris.

NICH team members, known as interventionists, support families dealing with medical conditions such as diabetes, cystic fibrosis, cancer, chronic pain and end-stage renal disease among other conditions. Available to families 24 hours a day, seven days a week, interventionists work across medical institutions, schools, juvenile justice systems and child protective services to complement and help streamline the needs of their patients and allow for the identification and remediation of the social determinants of health. 

Approximately 46 percent of the 170 patient families that NICH has served to date are from single-parent households, and 48 percent struggle with unemployment or employment insecurity. Further, 76 percent suffer from a variety of psychological and behavioral problems, while nearly 40 percent experience housing insecurity.

“We strive to help resolve problems in the moment, because if left unsolved, they could lead to unnecessary and avoidable medical care,” Harris said. “We work with the most medically and socially vulnerable children and their families to build life skills that address not only the challenges of health, but life’s challenges as well.”

Since utilizing NICH services, Kristene says she has been able to land and maintain a career to support her family.

“They do the things I can’t,” she explained. “Beyond the transportation and coordination help, Taylor has benefitted tremendously from the emotional support of her NICH team. They’ve developed a unique relationship that Taylor responds to. One that is difficult for a parent to obtain.”

NICH program
Ingrid Gomez (left) looks over nail polish choices with Taylor Jennison, 17, June 13, 2017 at Zen Nails in Portland. Jennison participates in the Novel Interventions in Children’s Healthcare, or NICH program, which aims to improve the health and care of youth whose medical needs are compounded by social problems. (OHSU/Kristyna Wentz-Graff)

For the past six years, NICH’s intervention has helped dozens of families like the Jennisons reduce annual medical costs by up to 50 percent while the average length of a hospital stay decreased by more than 30 percent. And the success is spreading. In addition to launching pilot programs at Lucile Packard Children’s Hospital at Stanford University and Texas Children’s Hospital, the NICH team has received a grant from The Leona M. and Harry B. Helmsley Charitable Trust to evaluate dissemination processes and capture the precise improvements in patient health, care experience, and cost reduction associated with the program.

“With the help of this grant, we hope to create a strong model for broad dissemination of NICH across the country,” Harris said. “This way, more patients and families will have better access to effective health care services they require.” 

In the meantime, Taylor’s sense of humor and love of music has returned, and she has her sights set on a career as a neonatal nurse.

“The support that NICH has provided our family is priceless,” said Kristene. “It saved my daughter’s life.”  

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