Development of the Autism Family Navigator: A Pilot Study on Barriers to Care

Background: Navigation is a relatively new area of personalized health care, defined as a “proactive, intentional process of collaborating with a person and their family to provide guidance as they negotiate the maze of treatments, services, and potential barriers” as they seek health care (Fillion, 2012). Originally designed/implemented with patients diagnosed with cancer, navigation is now used for a wide range of health conditions to reduce barriers to health care outcomes (Wells et al., 2013). Multiple sources of evidence suggest the need for navigation support for families affected by Autism Spectrum Disorder (ASD). There are often long delays between parents’ first concerns about ASD, diagnosis, and receipt of interventions (Steiman et al., 2008). Throughout this period and beyond, caregivers take on duties of “case managers” and experience serious challenges in navigating complex and uncoordinated systems of care (Nicholas et al., 2013), with disparities reported in access and/or utilization of services (e.g., Savion-Lemieux et al., 2014).

Objectives: The objective of the current pilot study was to identify the most common unmet needs and barriers faced by families while navigating community services. This study will help inform the development of an Autism Family Navigator model to support personalized care for ASD.

Methods: This pilot study was conducted in Montreal (Quebec), Canada where many aspects of health and social care are universal and publically (i.e., government) funded. From an overall group of 47 families routinely followed within a research program in a university hospital, 20 were identified as experiencing barriers in care access and/or coordination. Their children (5 girls; 15 boys) were diagnosed at ages 2-4 years and were 8-10 years old at the time of this study. A pilot Navigator worked with the primary caregiver to identify and address barriers to care. Each case was then reviewed by two authors (TSL, LG) to categorize the nature of concerns, barriers to care, and navigator strategies.

Results: The following categories of unmet needs were identified (including % of families affected per category): child’s skills and needs assessment (50%), revisions/issues pertaining to child’s diagnosis (25%), issues pertaining to child’s mental health (25%), assistance required to apply for government benefits (20%), issues pertaining to caregiver’s own mental health (5%). The following barriers were identified: unawareness of available community services (60%); lack of relevant public sector services (30%); long wait lists (25%); financial barriers (20%); language barriers (15%); and issues related to caregiver’s health/wellbeing (5%). To reduce barriers, the Navigator used these strategies: liaison with health care agents regarding the family’s unmet needs or supporting the caregiver to communicate with these agents (90%), psychosocial support (90%), and education about services (65%).

Conclusions: The findings illustrate that, even within a universal health care system, there are serious gaps in care access and coordination for families affected by ASD. While follow up is needed to establish whether the identified strategies were successful in reducing barriers, our pilot study demonstrates that navigation should be explored as a method of expanding access to and coordination of community-based care.