By providing clinical care for the population and training to clinicians statewide, the neurodevelopmental hubs are addressing a critical clinical need in Indiana. The program was developed by IU School of Medicine with input from families and community physicians to promote family-centered value-based care to prevent delays in receipt of needed services, duplication of services, excess utilization, and disorganized or fragmented care. The program aims to reduce the age of diagnosis for children with autism, reach all Indiana children with developmental screening, and raise awareness and acceptance statewide of the need for screening, diagnosis and early intervention.
Neurodevelopmental disorders are disabilities associated primarily with the functioning of the neurological system and brain. Parental surveys indicate that about 15 percent of children in the United States aged 3 to 17 years are affected by neurodevelopmental conditions, including learning disabilities, intellectual disabilities, and specific conditions (such as autism, spinal bifida and Down syndrome) along with hundreds of other rarer conditions. Families of children with neurodevelopmental conditions often struggle to receive a confirming diagnosis early enough to get intervention services while the brain is still at its most plastic time in development. These families also have difficulties when trying to access the broad expanse of appropriate services.
The Department of Pediatrics at Indiana University School of Medicine is working with communities throughout Indiana to establish a well-integrated and evidenced statewide system of care for children with neurodevelopmental and behavioral conditions. By detecting autism in children at an earlier age, the Neurodevelopmental Behavioral System of Care is advancing the lifelong outcome for these children and their families in Indiana.
The Neurodevelopmental Behavioral System of Care includes research, education and clinical care components and spans a person’s life-course in four levels.
With a typical age of diagnosis at five years and a high ratio of children in Indiana to developmental behavioral pediatricians, many children miss the potential benefit of early intervention. They—and their families—need appropriate screening, identification, and referrals for services.
The Neurodevelopmental Behavioral System of Care program improves long-term outcomes for children with neurodevelopmental conditions through population screening, timely diagnosis and entry into early intervention services. The program facilitates services to meet the needs of individual families and aids transition of care across a individual’s lifecourse.
If I’m going to highlight what we do well here, it’s collaborate.
The reason I’ve stayed here for 27 years is because I can reach across departments and sectors and communities of care and find people who are willing to work together. We have a great culture of collaboration here, and I think that that’s really important. Helping these kids isn’t about the School of Medicine or Riley Hospital; it’s about improving statewide health in Indiana.
-Mary Ciccarelli, MD
Collaboration is a critical aspect of the Neurodevelopmental Behavioral System of Care program in order to gather perspective and expertise for strategic planning, clinical education and research efforts. The program fosters respect, innovation and support across all team members to delivery consistent and timely communication to and from team members using methods such as town halls, electronic communication and so forth. The team works together to pool and share resources, including personnel, funding, space, supplies, for a satisfying balance of high quality cost-conscious efficiency as a team.
Program members reach into communities to serve as advocates and participants in building awareness and planning for children with neurodevelopmental and behavioral conditions. The program promotes primary care and specialty integration and statewide cross-sector planning and collaboration.