Role of Care Coordination in Improving Access to Services for Newly Diagnosed Children

Thursday, May 11, 2017: 5:30 PM-7:00 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
C. Rhodes1, K. M. Stiles1 and C. Hall2, (1)Marcus Autism Center, Atlanta, GA, (2)Emory University, Marcus Autism Center, Atlanta, GA

Difficulty accessing appropriate services and supports are major concerns of families and stakeholders in the post-diagnosis period. While early diagnosis of autism is essential, it is also imperative that young children begin receiving appropriate intervention and services following diagnosis without delay. In order to address challenges faced by families during this period and ensure smooth transition to necessary supports an innovative model of care coordination services was introduced. In recent years care coordination services have in received increased recognition as an important tool in achieving optimal health and wellness outcomes for vulnerable populations (APA Policy statement 2014) and as a key service for children with ASD (Doehring 2013).


The present study examines the utility of care coordination strategies to support families as they learn to navigate complex systems. More specifically, we looked at how our model of care coordination service provision provided immediately post-diagnosis impacted families in our clinic.

Methods:  The study took place in a large autism specialty center that serves an ethnically diverse and often economically disadvantaged population. In 2013, as part of a larger effort to improve the quality of clinic services, we began offering care coordination to all families on the day of diagnosis. Working collaboratively with the diagnostic team, the care coordination team developed comprehensive personalized packets of ASD resources and provider information unique to each child and family’s needs based on the team’s clinical recommendations. In addition to the take-home packet, each family met with a care coordinator who is then available to assist the family on an on-going basis. Beginning in 2016, satisfaction surveys were sent to all families receiving care coordination services post-diagnosis (n=462) with a response rate of 12% (n=55).


Survey responses indicated a high degree of satisfaction with services provided (94%). At the same time, 94.4% expressed satisfaction with meeting the care coordinator on the day of diagnosis. In describing what aspects of the program were most helpful, families ranked in order: (1)“receiving autism-related information resources”; (2)“time to ask questions”; (3)“information on community providers”; and (4)“emotional support”; however, the majority of families indicated “all of the above” as most helpful. In response to whether resources provided helped families connect with services, 76% responded in the affirmative. In addition, nearly all (98%) indicated intention for future contact with their care coordinator.


Survey results were overwhelmingly positive and confirmed our thinking that meeting with a care coordinator immediately post-diagnosis was beneficial. A repeated comment from families was that they appreciated receiving a resource packet and having someone to explain the information to them. While families rated individual aspects of the materials and services provided positively, the majority of respondents expressed most satisfaction with the combination of all four aspects of the program. The high level of satisfaction, in combination with the majority of respondents stating intent to continue contact with their care coordinator suggests the model may be a valuable addition to clinical service array.