Indiana Health

Neurodevelopmental Hubs

Bead table

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.

Cross-Disciplinary Collaboration

Led by Mary Ciccarelli, MD, and faculty in the Indiana University School of Medicine Department of Pediatrics, this program also includes faculty physicians in pediatrics, psychiatry, child neurology, genetics and other medical specialty areas.

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.

Full-Life Care

The Neurodevelopmental Behavioral System of Care includes research, education and clinical care components and spans a person’s life-course in four levels.

Autism
505000
Hoosier children are under 5 years old
23
Percent of US children under 3 diagnosed for ASD/DD
1611
Indiana children per pediatrician
394864
Children per developmental pediatrician in Indiana

Program Purpose

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.

Program 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.

Research

Research

IU School of Medicine is building a research forum to collaborate and encourage idea development and further studies.
Education

Education

The program trains primary care providers to evaluate and diagnose children with autism or developmental delay using STAT, a proven screening tool for autism in toddlers and young children.
Clinical Care

Clinical Care

The Neurodevelopmental Behavioral System of Care is a statewide effort to improve early detection and intervention for children with autism or developmental delay.

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

Teamwork

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.

Community Advocacy

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.