Families waiting for diagnostic and intervention services for children exhibiting signs of autism spectrum disorder (ASD) wait even longer if they live in rural areas or come from culturally or linguistically diverse communities. Now, teams from the University of Minnesota’s Masonic Institute for the Developing Brain will help bridge the gap with interim telehealth interventions.
Under a $600,000, three-year grant from the Health Resources & Services Administration, an agency within the U.S. Department of Health and Human Services, researchers from the Institute on Community Integration and the University of Minnesota Medical School’s Department of Pediatrics – both part of MIDB – will conduct a large-scale, randomized control trial of Naturalistic Developmental Behavioral Intervention and diagnostic services that are delivered via telehealth. The project aims to improve communication and challenging behavior using a supplemental model of support while families await formal ASD evaluation or intervention.
“The wait time between when a family is concerned about their child’s development and when services and supports are actually delivered can last years, which is a significant problem,” said Jessica Simacek, director of the MIDB TeleOutreach Center and the principal investigator (PI) on the project. “This grant will accomplish a number of important goals, expanding on a model we have been exploring for some time, and doing so on a larger scale.”
The project, Bridging Barriers to Intervention Access for Waitlisted Children with ASD and Their Families, is part of HRSA’s Autism Field-Initiated Innovative Research Studies Program (Autism-FIRST).
It builds on work the MIDB TeleOutreach Center originated with a philanthropic grant from the Richard M. Schulze Family Foundation. The Center provides research, training, and technical assistance through innovative and secure technology to address barriers to care for children, youth, families, and professionals in the field.
“Providers lost a lot of staff due to the pandemic and also had to reduce the number of households staff could visit because of COVID precautions, so wait times for intervention services have really increased,” said Amy Esler, section head of the UMN Autism and Neurodevelopment Clinic, interim co-director of MIDB Clinic, and co-PI on the project.
“This collaboration will help families start working on things now as they wait for the more intensive services, and it will help us evaluate how well it is working,” Esler said.
Because telehealth services often involve supporting parents to deliver interventions, investigators will also measure caregivers’ effectiveness in implementing strategies. Working through evaluation clinics and intervention providers, the project will include a minimum of 50 families with children ranging in age from 1 to 5 years old. The study also involves follow up visits to evaluate the impact of the model on children and families’ lives over time.
“We’re trying to provide as much support as possible to families early on because they are inundated with a big learning curve to understand what services are out there and what will work best for their family,” said Adele Dimian, associate director of the TeleOutreach Center and co-PI on the project. “We tend to work with children who have complex communication needs, and we’ve been able to fairly quickly give them strategies that work well. By sharing these alternative communication strategies, we’ve also seen improvements in self-injurious behaviors that interfere with children’s and families’ quality of life.”
A critical piece of the award focuses on health equity and reducing geographic and disproportionate access patterns to services, and related barriers faced by many Minnesota families.
ICI’s Muna Khalif (pictured at right), key personnel on the grant and the project coordinator for the TeleOutreach Center, will serve as a project interventionist in Naturalistic Developmental and Behavioral Intervention and evaluation. As a Qualified Intercultural Development Inventory Administrator, Khalif will also help to support the team and diverse communities involved in the study, including in the Hmong, Somali, and Spanish-speaking communities.
“Telehealth plays a big role in promoting health equity and reducing barriers to service,” Khalif said. “As a parent with a child currently on a waiting list for services, I can tell you these barriers have become worse since the start of the pandemic. Without services, these kids and families are losing opportunities for support.”