School Advocacy: The Missing Link in Cardiac Follow-Up Care
Dr. Cheryl L. Brosig, PhD
Professor of Pediatrics and Chief of Pediatric Psychology and Developmental Medicine at the Medical College of Wisconsin.
Kyle Landry
Educational Achievement Partnership Program Manager, Children’s Wisconsin
The details are different but the story is always the same – they fixed his heart, why is school so hard?
Children born with congenital heart defects and other pediatric heart diseases are at risk for neurodevelopmental deficits, delays, and differences due to a variety of factors, including prenatal brain injury, fetal cerebrovascular physiology and oxygen delivery, decreased brain maturity, the effect of cardiac surgery on the brain, and the long term effects of lengthy hospitalizations on development. Through years of research, neuropsychologists have learned, and families have witnessed, that children with heart disease may experience limitations in physical and mental strength, vitality, alertness and often score lower in hand-eye coordination, fine and gross motor skills, social-emotional functioning, and language development than their typically developing peers. Behavior, attention, immaturity, and learning challenges are also much more common among children with heart disease.
Though many children with heart disease will experience typical neurodevelopment early on, it isn’t uncommon for new concerns to arise at different stages from preschool through adulthood as independence, organization, and skill level demands increase.
These neurodevelopmental challenges may affect multiple domains and can result in more substantial academic concerns over time as these deficits generally do not self-correct and these children cannot simply “catch-up” on their own.
While schools have established special education programs and supports, educational teams often lack the medical expertise to identify the unique, often subtle, neurodevelopmental needs of cardiac patients. On the other hand, medical providers often focus on aspects of the patient’s physical health, may lack experience in the complex educational system, and do not typically communicate extensively with schools. To further complicate things, unlike heart disease which is diagnosed and treated by medical specialists, neurodevelopmental deficits may be separately identified by medical and school practitioners, using different metrics and qualification criteria, resulting in different follow-up and missed opportunities for early intervention. In fact, a 2014 study led by the Herma Heart Institute’s own Dr. Cheryl Brosig revealed that medical providers recommended academic support for cardiac patients over 3 times more often than schools were actually providing these services.
Even with the ongoing support of two highly qualified, well-intended teams, both advocating for the student’s best interest, our children continue to fall through the cracks.
Children’s Wisconsin’s Educational Achievement Partnership Program (formerly known as the School Intervention Program) supports Herma Heart Institute patients by providing care coordination services that extend far beyond the walls of the hospital to maximize quality of life. The EAPP places experienced educators specially trained in complex medical conditions and the related impacts of surgeries, treatments, medication, and complications on cognition, physical health, and neurodevelopment at the center of a coordinated care team to ensure clear and consistent communication among families, medical staff, school staff, and community care partners. Through this collaborative partnership, the EAPP removes the burden of translating technical medical information from families and educates school staff on the child’s unique cardiac anatomy and the related heart-brain-body connection.
While I could talk about the EAPP all day, here’s what I want you to know: the “secret sauce” is that there are no secrets!
Through this Sisters by Heart blog series you will learn more about ADHD and Executive Functioning challenges related to CHD and how you can help support your child most effectively. As the series wraps up, I’ll be back to share 5 essential steps that the EAPP uses to educate school staff on the unique heart-brain-body connections and give YOU the tools that the EAPP has used to achieved a 97% success rate getting cardiac patients new or expanded health and education plans that allow our patients to thrive in the classroom setting. You won’t want to miss it!
Dr. Cheryl Brosig
is a Professor of Pediatrics and the Chief of Pediatric Psychology and Developmental Medicine at the Medical College of Wisconsin. She serves as the Medical Director of the Cardiac Neurodevelopmental Follow Up Program and the Educational Achievement Partnership Program in the Herma Heart Institute at Children’s Wisconsin. Her clinical and research interests focus on neurodevelopmental and psychosocial outcomes in children and families affected by pediatric heart disease.
Kyle Landry
is the Educational Achievement Partnership Program Manager at Children’s Wisconsin. Since starting the program in 2015, she has served over 500 children with pediatric heart disease by conducting comprehensive school assessments in the clinical environment and helping school staff implement interventions within the school setting. Landry has a bachelor’s degree in Early Childhood Education (2010) and a master’s in Cultural Foundations of Community Engagement and Education (2018) from the University of Wisconsin - Milwaukee. Landry’s previous teaching experience specializing in youth placed at risk for school failure illuminates her belief that every child should have equal access to quality education.