Upstate Golisano Children’s Hospital will confer with other top centers on best practices and care for children with autism.

Upstate Golisano Children’s Hospital has been invited to become a member of the Autism Care Network, the first and only network of its kind focused on better autism care, aimed to improve health and quality of life for children with autism and their families.

Upstate joins 24 other hospitals in the network, including Children’s Hospital of Philadelphia (CHOP), University of Rochester Medical Center - Golisano Children's Hospital, and Cincinnati Children's Hospital Medical Center in the network.

Henry Roane, PhD, division chief of the Center for Development, Behavior and Genetics at Upstate and the executive director of the Golisano Center for Special Needs, said inclusion in the network will benefit clinicians, patients and their families in several ways. 

“The goal of the care network is to bring centers together to discuss what’s working at their clinics,” Roane said. “It is also a venue for providers and parent advocates to say, ‘these are the problems we’re seeing’ and to provide a network to problem solve and troubleshoot with the ultimate goal of improving clinical care and quality of life for children with autism.”

Launched in April 2021, the network is supported by Autism Speaks, AIR-P, the J. Donald Lee and Laurelle Lee Family Foundation and PCORnet.

Roane said the network is also a way for centers to give feedback to Autism Speaks about issues families deal with, and in turn, these issues can become research or clinical initiatives.

“It really has a direct impact on the families, it has a direct impact on the clinicians, but it also has a little more of a global impact on setting directives and some objectives for Autism Speaks,” said Roane, who is among a team of four experts that recently received a grant from Autism Speaks to work toward improving care for autistic people experiencing severe behavioral challenges.

Members of the care network meet via monthly webinars led by a different center each time, where things like best practices and changes in the field will be discussed. Inclusion in the network includes a small amount of grant money to support the salary of a site coordinator.

 “Being connected with these other programs enables us, almost forces us, to be more engaged and to have greater awareness to practice guidelines, changes to best practices, changes to care models that we are not currently doing,” Roane said. “We will be able to take our collective knowledge from all of those sites in the network and apply it to care provisions in Syracuse, which will make our program better.”

Roane said Upstate has seen a 17 percent increase in the number of appointments for patients with autism in the past year.

Roane collaborated on the application to join the network with Upstate Golisano pediatrician Diane Montgomery, MD. Occupational therapist Wendy Miles, MSoT, will be the site coordinator and quality improvement coordinator for Upstate.

Roane thanked Linda Veit from the Office of External Affairs, Sarah Trapani, from the Office of the President and Upstate President Mantosh Dewan, MD, for their work in supporting Upstate’s inclusion in Autism Speaks.

 

Henry Roane, MD, division chief of the Center for Development, Behavior and Genetics at Upstate and the executive director of the Golisano Center for Special Needs.