Novel Interventions in Children’s Healthcare (NICH) Serves Vulnerable Youth Struggling with Type 1 Diabetes
While many health interventions focus on helping the most engaged patients, seeing this as low hanging fruit for improving outcomes, the Novel Interventions in Children's Healthcare (NICH) team takes a different approach. They’ve created a platform and care strategy that tackles the most complex and costly patients with Type 1 diabetes. Their innovative program reduces costs and saves lives by meeting the holistic needs of vulnerable youth.
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Origin Story
In 2011 Michael Harris, PhD, was flying to Albuquerque, New Mexico, to visit family for Thanksgiving when he started putting together an idea to solve a persistent problem he had faced as a healthcare provider. In his diabetes clinic he encountered young people struggling to successfully manage their diabetes because of insurmountable social problems, including poverty, social isolation, lack of access to diabetes tech, instability in their families, among many other challenges. Many of these young people were repeatedly hospitalized and experiencing avoidable deterioration in their diabetes and overall health.
“I was really frustrated. I was seeing these young people in my diabetes clinic, and I really had nothing to offer,” says Harris. As he started brainstorming solutions, his focus turned to what seems to get people’s attention in healthcare more than anything else: money. “I was thinking about dollars because it seemed like people don’t invest in programs because they make sense or improve people’s lives and health, but because they have an ROI attached to it,” he says.
After returning to Oregon, he shared his idea with Kimberly Spiro, PhD, a friend who had a background working in intensive, community-based mental health programs in the foster care system. They brainstormed further, drawing from some notes Harris had jotted down on a napkin on the plane during his trip to Albuquerque; then Harris sent an email to the director of his local Medicaid office, pitching the idea with the enticement that it could save Medicaid money.
Harris proposed to provide intensive community-based services to youth with diabetes and other chronic and complex medical conditions who also experience significant system and social challenges. It would require a buy-in from Medicaid, but Harris assured Medicaid that the savings from avoiding repeat hospitalizations would far outweigh the investment. To Harris’s surprise, they immediately wanted in.
Harris and Spiro soon began to pilot Novel Interventions in Children’s Healthcare (NICH), which serves young people living with diabetes and other complex and chronic conditions who are considered high risk, high needs, and most importantly high costs. Currently, NICH serves around 160 young people at any given time in hospitals throughout all of Oregon and at two sites within California’s Bay Area (Stanford University and University of California – San Francisco). The program has proven effective in improving the health outcomes of young people and saving the system money. Although they now ask for more money to serve a patient for one year than they did back in 2012, the average cost savings from the year prior to a patient enrolling in NICH to the year of enrollment is $30,000 with an additional reduction of $15,000 to $20,000 in Medicaid paid claims the year after discharge.
The Problem
As the Clinical Director, Spiro is well aware of the problems facing NICH’s patients. In addition to contending with complex and chronic medical conditions like diabetes, these young people also face significant social challenges such as unstable housing, lack of access to phones or internet, and poverty. Many of them have parents that suffer from their own health problems, mental health issues, or substance abuse problems. Some of their parents are incarcerated or can’t keep stable employment because of their child’s regular medical appointments. And then, there are also parents that don’t speak English, making it near to impossible to navigate the healthcare system.
“The hospital tries to connect these patients with community services but when you are living in survival mode, you have no time or energy to connect to the resources that exist in the community,” says Spiro. “There's this breakdown between the hospital and the community with no infrastructure to address the true challenges these families experience on the daily, and these kids are just slipping through the cracks. As a result, they are our most vulnerable children and exist in every community in the United States, butw they are largely invisible until they come into our hospitals in medical crisis,” adds Spiro.
The cost of treating these young people at hospitals is very high. “Young people come into our institution repeatedly for avoidable reasons that cost the system a disproportionate amount of healthcare expenditures,” says Harris. Spiro explains that part of the strategy in getting people’s attention and buy-in has been for NICH to focus on serving the top 5% of children and adolescents who account for 48% of all medical expenditures.
But the bottom line isn’t the most pressing concern for the NICH team. “We’re doing this because we want the best care and highest level of access for our most vulnerable youth and their families. The system is broken for all of us, but it has its greatest negative impact on youth from marginalized communities,” says David Wagner, PhD, Research Director.
Harris recalls one young person who exemplifies the gravity of their mission. “We had a young teen with Type 1 diabetes who I had seen in clinic and had unsuccessfully petitioned for a contract for NICH services with the insurer,” says Harris. “This young person was on the autism spectrum and living with grandparents who had custody because the youth’s parents died in a car accident years ago. This young person’s grandfather was the primary caregiver, and the grandmother was on hospice, however, both grandparents were in failing health. When the grandfather had an acute medical emergency and was life-flighted from their rural community to a hospital in Portland, this young person was left alone with the grandmother. Unfortunately, the teen died of diabetic ketoacidosis (DKA) while the grandfather was at the hospital. We’re not serving a population that will be fine with the status quo. We are serving our highest risk, highest needs, and highest cost youth.”
The Solution
Spiro tells another story of a patient – this one with a more hopeful ending. This young woman lives with Type 1 diabetes and couldn’t live with her mother who had substance abuse problems. “She was sent to live with her grandmother in a single-wide trailer in rural Oregon,” says Spiro. The girl’s situation quickly deteriorated. “She assaulted a principal, she was running away regularly, and had multiple DKAs,” says Spiro. With the help of NICH, she was able to stabilize her health through regular check-ins to make sure she was monitoring her blood-sugar levels and giving herself insulin. “She earned rewards for doing those things and we were able to get her on a Dexcom and eventually access to a pump,” says Spiro, who explains that Medicaid often waits for a patient to meet requirements around self-regulation before providing access to healthcare technology. With the support of her NICH interventionist her A1C levels dropped by two points, her school situation stabilized, and she was able to continue living with her grandmother. “Without NICH she was on the verge of ending up in foster care, further impacting her quality of life and costing the system even more money,” says Spiro.
How It Works
This intensive, hands-on approach to working with patients is central to the way NICH operates. “The problems of these young people are not successfully managed with more medical care. The solution is getting into their lived experience and understanding the true drivers of a deterioration of their health,” says Harris. NICH provides daily contact either in person or through personalized technology, 24/7 family access, and intensive home-and-community-based services, typically for one year. “The most important thing we do is build relationships with people who have lost trust in the system,” says Wagner.
Interventionists, who each have caseloads of eight patients, do most of this on-the-ground relationship building. “Many of our interventionists live with T1D, so they can check their blood sugars with the kids they’re working with and dose insulin side-by-side with them as well,” says Wagner. In addition, “many of the interventionists are bilingual and representative of the communities we serve, which allows families to receive services in their preferred language and, we believe, provides an opportunity to engage families from groups who have historically experienced discrimination in larger systems, including healthcare.” adds Wagner. “The staff builds trusting relationships with the families that no one else has been able to, thus getting access to the lived experience and the true challenges,” says Wagner.
Spiro describes their solution as a two-pronged approach. The first step involves stabilizing the lives of their patients and then building skills in helping the families more successfully navigate the broken system. The stabilization step begins with gathering information around the history of each patient and their family and then identifying barriers to care and finally connecting the family with community resources. The path to stabilization may look very different from patient to patient. It could involve helping a parent find employment, providing a young person with a phone to track blood sugar levels, liaising with school nurses, or advocating on behalf of the children to give them access to healthcare technology.
Skill building happens in a scaffolded approach. After assessing the skills of the patients and their caregivers, interventionists help patients build new skills through a step-by-step process that involves a lot of prompting and reinforcement. Another key component of NICH is ensuring that those who provide care for and educate youth in NICH are well-informed of the challenges the youth and families are facing.
Interventionists also share with medical providers, school staff, and others the unique ways of supporting each family that will lead to the most success. Together, these interventions lead to increased empathy from those providing care, personalized tailored medical and educational plans, and warmer and more collaborative relationships between youth, parents, medical teams, and school staff.
Our Take
NICH took on a problem for which no one had an answer and crafted a solution that is improving the lives of vulnerable young people and saving money for the healthcare system including payors and hospitals alike. “We see a 30% reduction in youth experiencing admission for diabetes when they’re in the program and a 50% reduction in youth that need to be admitted for DKA,” says Wagner.
Other benefits of the program include overall improvement of health among patients, improvement of care, reduction of provider burnout, and a reduction in health inequities among youth of color. It’s a program that’s proven to work and we admire NICH’s commitment to saving lives. “We feel incredibly passionate about doing this work, but only after focusing on the money were we able to get this life-saving program to our most vulnerable youth,” says Harris. “Although we’ve heard “no” before, by bringing the patients’ stories into the boardroom we’re making it incredibly hard for decision-makers to say “no” in doing the right thing for the most vulnerable.”
They have ambitions to work within five additional children’s hospitals in the next five years and beyond that, to extend their reach nationally so that these vulnerable children – who live in every community – can get the help they need. StartUp Health is honored to support NICH in serving this population.
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Published: Mar 15, 2024