An accurate diagnosis of autism spectrum disorder (ASD) is possible when a child is 18 months old, but the average age of diagnosis and initial intervention remains above 4 years. Many community providers and the families they serve lack a clear pathway for accessing diagnostic services and knowledge of available resources, delaying care that could improve developmental outcomes.
Researchers from the Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) hope to close this gap by establishing a learning and family navigation system to improve care coordination for children with ASD, particularly those in medically underserved areas.
Armed with nearly $1.5 million in funding, the network, called the Tennessee Cares for Autism Spectrum Disorders Navigation Network, aims to train and empower community pediatric medical providers to recognize and understand ASD, diagnose when appropriate and learn how they can best help patients within their practice.
The network will also encompass an integrated system of follow-up support for families who are experiencing gaps in diagnostic and post-diagnostic care.
“This is a tremendous opportunity to support the community medical providers who are on the front lines of screening young children for ASD,” said Jeff Hine, PhD, assistant professor of Pediatrics at Vanderbilt University Medical Center and primary care integration lead for the study. “Most pediatricians are concerned that some of their young patients have ASD, but they may not know what to do next or feel frustrated by a lack of access to services. We want to help more children receive this important care within their community provider’s office.”
To reduce the age of diagnosis and health disparities within the ASD community, the researchers believe that family navigation must be tied to provider education and programs that increase capacity, otherwise risking longer wait lists for services and referrals for care that cannot be accessed.
The project’s goal is to connect families and providers with a family navigator within seven days of identification.
Using telemedicine services coupled with an online learning collaborative that offers guidance for caring for patients with ASD, the researchers hypothesize most families will move from screening, through evaluation, to service system engagement within 90 days, a process that typically takes several months, especially for families in rural areas.
“Over one-third of Tennessee’s population lives in rural counties. This grant emphasizes reaching families in medically underserved regions who might not otherwise be able to travel to specialists,” said Amy Weitlauf, PhD, assistant professor of Pediatrics and the program evaluation lead for the study. “This is an especially important issue for families of young children with autism or other developmental concerns.”
The network will build upon TRIAD’s existing family navigation services offered through Nina Harris, who operates the Vanderbilt Autism Resource Line. The project will hire two additional family navigators for extra support.
“We look forward to increasing our ability not only to talk with families, but to communicate back with their medical providers to close any gaps in follow-up care,” said Harris.
By involving an advisory group of community stakeholders, researchers hope to design a navigation model that is sustainable beyond the initial project and can be replicated in other states.
“Our growing telehealth capacity and close relationships with the Tennessee Early Intervention System, regional advocacy groups and advisory councils put us in an excellent position to strengthen existing collaborations and establish a statewide network of expertise in autism care for young children,” said Zachary Warren, PhD, principal investigator for the project.
“This funding supports expansion of many of our existing programs across existing geographic, linguistic and agency boundaries.”
Funding is supplied by the Health Resources and Services Administration (HRSA 1 H6MMC33236-01-00).
