In a sense, Kyle Landry was destined for her role with Children’s Wisconsin.
When Landry’s younger sister passed away shortly after birth due to a congenital heart defect, her family became heavily involved with the Herma Heart Institute at Children’s Wisconsin. As a kindergarten teacher years later, Landry discovered one of her students had a congenital heart defect. Landry knew children with heart disease are at risk for neuropsychological deficits and poor academic outcomes, so she wanted to do something to help her student thrive in school.
“Because I had previous connections at the hospital through my family, I was able to pull a meeting together to address this gap,” said Landry, MEd, program manager at Educational Achievement Partnership Program (EAPP) at Children’s Wisconsin in Milwaukee. “Going into the meeting, I had no intention of being the person to do this work — I just wanted to tell the hospital so they could find the right person. But, nine years later, here I am.”
That meeting led to the creation of the EAPP. With Landry leading the way, it’s grown from supporting 12 heart transplant patients in the program’s first year to more than 2,000 chronically ill children today. When it launched in 2015, it was one of the first programs in the country to integrate systematic educational intervention with the hospital’s standard cardiac care. And although its focus has broadened to include students with all types of chronic illness, its mission remains the same: “to advance long-term educational achievement in children with chronic illness through collaboration, knowledge, advocacy, and commitment, ultimately allowing every child the opportunity to reach their optimal potential.”
Five-step process
EAPP serves as a liaison between the student’s family, the school, and their medical team. Eligible patients are referred to the program by their health care provider and assigned to one of EAPP’s education specialists, who receive special training in the neurodevelopmental impacts of chronic illnesses. Their intervention begins with an assessment to identify the child’s educational needs and knowledge gaps between the family and school personnel. It includes surveys and questionnaires that gauge the child’s health, development, psychosocial adjustment, and academic skills.
Nearly 70% of students report improved school experiences after participating in EAPP.
From there, the EAPP specialist develops an individualized intervention plan including an explanation of the student’s medical condition and how it uniquely correlates with their educational needs. The explanation of the health-body-brain connection for pediatric heart disease may contain the following information:
- Medical condition. The basic underlying impacts of pediatric heart diseases, such as the effects on heart function and circulation of blood and oxygen throughout the body.
- Body and health impact. The symptoms arising from the condition, which could include breathing disturbances, low energy or fatigue, increased susceptibility to viral illnesses, and limited strength or vitality.
- Brain impact. The effect of disrupted blood and oxygen flow to the brain, such as reduced functional connectivity between brain hubs and the repercussions of surgeries and long hospital stays on brain development.
- Neuropsychological deficits. Delays in developmental areas, including learning and comprehension, attention, behavior, fine and gross motor skills, and social-emotional adjustment.
- Educational challenges. Specific needs in terms of educational concerns and addressing neuropsychological deficits.
Although the program provides individualized plans, Landry says a key component is providing schools with a foundation for how to educate all children with chronic illnesses.
“We’ve done a lot of work based on the School-Friendly Health System (SFHS) principles to empower our partners,” Landry said. “School nurses, school psychologists, classroom teachers, counselors — a lot of people are involved on the education end, and we want to give them the tools, resources, language, and confidence to be able to do it with the next 15 kids with chronic illness who come into their classrooms.”
Education, understanding crucial to success
The EAPP program has proven effective in bridging the knowledge gaps between students with chronic illnesses and the school leaders who spend so much time with these children. EAPP assessment data shows that while most teachers (76%) and school nurses (86%) were aware of a student’s cardiac condition, fewer than a third knew that cardiac conditions could lead to developmental delays or impact a student's learning. However, after utilizing EAPP services, the program’s school partners report:
- Three-quarters of teachers and school nurses have an improved understanding of a participating child’s medical diagnoses and health care management needs.
- Seventy percent of school nurses and 78% of teachers have a stronger understanding of the connection between chronic illness and the risk for developmental delays and learning difficulties.
- More than 75% have a higher confidence level in explaining a child’s medical condition and needs.
Perhaps most importantly, the students themselves are recognizing the benefits — nearly 70% of students report improved school experiences after participating in EAPP. Program leaders say the attention to quality measures is integral to its evolution.
“It has been important for this body of work to focus on not just the program delivery, but the impact it is making,” said Bridget Clementi, vice president, community health, Children’s Wisconsin. “These are unique and critical elements that continue to advance the success of EAPP.”
