Meeting the Needs of Families Affected By Autism Spectrum Disorder through Delivery of a Best-Practice Model of Care Coordination

Background:  Families of children with autism spectrum disorder (ASD) report significant problems accessing health care and support services. The care needs of children with neurodevelopmental disabilities are straining the capacity of the healthcare service system. Programs that offer accessible, evidence based care coordination services are critical for improving child, family, and system outcomes. Pediatric care coordination is defined as a patient and family-centered, assessment driven, continuous, team-based activity designed to meet the bio-psychosocial needs of children and youth, while enhancing person and family care-giving skills and capabilities.

Objectives:  The objectives of this study are twofold: 1) to characterize the unmet needs of children with ASD and 2) to determine whether a best-practice model of care coordination can assist families and clinicians in addressing these needs.

Methods:  This study was completed as a part of a broader ongoing pilot study which employs an implementation science approach to evaluate the effectiveness of a best practice model of care coordination with children with neurodevelopmental disabilities and their families. A service model of care coordination, as put forth by McAllister (2014), was delivered to a subset of 60 children ages 2-8 years (mean age: 5.1 years; 85% male) diagnosed with ASD and their families. The care coordination intervention is delivered by a dyad consisting of a clinician and care coordinator in a children’s hospital outpatient setting. Prior to and during a planned care visit, a Shared Plan of Care (SPOC) is jointly completed with the family. The SPOC includes a comprehensive medical summary and a set of negotiated actions (i.e., goals and strategies to address unmet needs and enhance family advocacy skills) generated together between the family and team. Following the planned care visit, these unmet needs are addressed during a three-month period of care coordination.

Results:  Categories of reported unmet needs among families include: developing an understanding of the child’s diagnosis and developmental level, referrals for subspecialists to address co-morbid medical needs, navigating/advocacy related to special education, enrollment in behavioral and rehab services, increased communication with primary care/community care network, and accessing needed health care financing resources (mean total unmet needs = 7.6). Of the families who have completed the care coordination intervention to date, 74% of unmet needs have been addressed (i.e., goals completed or in progress) by the end of the three month period. Data collection is ongoing; data will be presented on relative frequencies of unmet needs across categories as well as whether categorical differences exist with regard to types of needs met though the care coordination intervention.

Conclusions:  Unmet needs of families of children with ASD are reported across medical, psychosocial, educational, community, and financial domains. This best-practice model of care coordination provides a promising approach to family-centered service delivery to address the critical unmet needs of children with ASD and their families. Addressing these unmet needs holds the potential to improve child outcomes, reduce family burden, and lower system costs over the child’s life course.