Even when children and youth with I/DD are connected to a primary care medical home, there are often unmet needs and confusion about how to best provide the medical and mental health care needed by these youth and their families. Family members of individuals with I/DD in NC and nationally report high levels of frustration with health care and IDD system navigation.

Duke proposed a pilot project to create an I/DD medical and behavioral health telephone consultation program that will provide support to Primary Care Providers s, as well as behavioral health teams caring for youth from 3 to 22 years of age. This project is a partnership between Duke Health as the lead institution, and North Carolina START Central and UNC (both UNC Pediatrics and the Carolina Institute for Developmental Disabilities (CIDD)). Through this partnership, they will create a telephone consultation program to specifically target youth with I/DD cared for by Duke Children’s Primary Care Pediatrics (DCPC), UNC Pediatrics and the Complex Care services at both institutions.

Specific Aims:

1. Establish a telephone consultation infrastructure and staffing plan to provide timely consultation to providers from DCPC, UNC Pediatrics, and NC-START regarding the medical and behavioral health needs of youth with IDD

2. Provide referral support for youth with IDD identified by DCPC, UNC Pediatrics, and NC-START to connect youth with IDD and their families with appropriate resources

3. Conduct a pilot evaluation of the youth with IDD telephone consultation program focused on feasibility, acceptability to providers, youth and family experience, and distal outcomes including health service utilization

Principal Investigator: Gary Maslow, MD, MPH

NC PAL IDD team: Robert Christian, MD; Amanda Zaski, MSW; Jillain Baker, MSW; Jill Hinton, PhD; Neal DeJong, MD; J. Nathan Copeland, MD

Website: www.ncpal.org