Upstate Golisano Children’s Hospital joins autism network

SYRACUSE, N.Y. — Upstate Golisano Children’s Hospital says it has been invited to become a member of the Autism Care Network. 

It’s described as the “first and only network of its kind focused on better autism care, [seeking] to improve [the] health and quality of life for children with autism and their families,” per a Sept. 19 news release on the Upstate Medical University website.

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

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.

Inclusion in the network will benefit clinicians, patients, and their families in several ways, Henry Roane, division chief of the Center for Development, Behavior and Genetics at Upstate, said. 

“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.” Roane is also executive director of the Golisano Center for Special Needs.

Launched in April 2021, the Autism Care Network is supported by Autism Speaks, a New York City–based organization focused on advocacy and research, AIR-P (Autism Intervention Research Network on Physical Health), the J. Donald Lee and Laurelle Lee Family Foundation, and PCORnet (National Patient-Centered Clinical Research Network.)

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.

Roane is among a team of four experts who recently received a grant from Autism Speaks to work toward improving care for autistic people experiencing severe behavioral challenges.

Members of the care network convene through monthly webinars, led by a different center each time, to discuss matters such as best practices and changes in the field. Inclusion in the network includes a small amount of grant money to support the salary of a site coordinator, Upstate said.

“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 that Upstate has had a 17 percent increase in the number of appointments for patients with autism in the past year.

Roane collaborated with Upstate Golisano pediatrician Dr. Diane Montgomery on the application to join the network. Occupational therapist Wendy Miles will serve as the site coordinator and quality improvement coordinator for Upstate.