Developmental and Behavioral Pediatrics: Other
Developmental and Behavioral Pediatrics 6
Benjamin W. Sanders, MD, MSPH, MS (he/him/his)
Doernbecher Children's Hospital at Oregon Health & Science University
Portland, Oregon, United States
Children 0-3 years old with developmental delays benefit from therapies provided by state Early Intervention (EI) programs. But as many as half of EI referrals do not result in EI evaluation. EI Referral Coordinators (RCs) are the initial contact for families referred to EI, and as such play an important role in the referral process. In this study, we examine the unique perspectives of RCs to better understand why many referred children do not successfully connect with EI.
Explore barriers and facilitators to referral completion from the perspective of RCs, including RC roles and responsibilities, RC communication with families, and RC perceptions of family attitudes and understanding of their child’s referral to EI.
Our team (2 general pediatricians, 1 SLP, 1 undergrad) conducted semi-structured interviews with EI RCs via teleconference. Leaders of state EI programs representing all major US census regions were asked to provide contact information for at least three RCs in their state, who were then emailed for interview requests. All participants were experienced in their local EI referral intake process. Interview questions were based on relevant literature on access to EI services, and addressed barriers and facilitators to referral completion and RC interpersonal communication approaches. Interviews were recorded and transcripts were coded and analyzed in Dedoose using iterative, inductive-deductive qualitative analysis.
Four major themes were identified. The first, RC as Ambassador, Educator, or Administrator describes RC perceptions of their roles, which tend to fall into a few archetypes. The second, I just need correct information illustrates importance of correct information on referrals and the work RCs do to acquire it. The third theme, Some families are a little difficult to get a hold of describes challenges in making initial contact with families of referred children. The fourth theme, They’re like, ‘Yeah I don’t have any concerns’ regards parents of children referred to EI by child protective services.
These RC perspectives on referral completion may represent prevalent strengths and challenges to inform program and policy improvement. As the family’s initial contact from EI, RCs are in a position to positively influence parents’ engagement with the program. Making initial contact with the family is a major challenge, mediated by RC access to correct contact information. Lastly, the burden of referrals from child protective services as mandated by federal policy seems significant and results in many declined referrals.