Care-coordination factors affecting postsecondary outcomes for minimally verbal young adults with autism

Principal Investigator(s):
Elizabeth McGhee Hassrick, PhD
Paul Shattuck, PhD
Renee Turchi, PhD
Jessica Walton, BA
Grant Type:
Applied Research
Funding:
$30,000
Organization:
Drexel University and St. Christopher's Hospital for Children
Philadelphia, Pennsylvania
Year Awarded:
2019
Topics:
Health and Sensory Issues; Social and Communication Skills

Abstract

People with autism spectrum disorder (ASD) often have complex healthcare needs, increasing their risk of poorer health outcome. For the roughly one quarter to one third of transition age youth with ASD who are “minimally verbal” (i.e. have little to no spoken language used spontaneously for communication), and who are living in a household with low income, the transition from pediatric to adult healthcare is often tumultuous. This mixed methods pilot study seeks to understand the specific communication and care coordination challenges to healthcare transition for minimally verbal youth with ASD from low income households, and the goal is to produce information that healthcare practices can use to improve healthcare transition services for this particularly vulnerable population. Our multi-method study consists of 1) interviews with stakeholders including healthcare and service providers, caregivers and, when possible, MV youth (ages 12 and older) (using innovative data collection methods which we will pilot test in this study); and 2) social network surveys to analyze care coordination efforts among healthcare and service providers, caregivers, and MV youth, when possible, to investigate their transition support networks. The practical relevance of these findings will not only identify the challenges for MV youth living in low income households, it will help us understand how to adapt transition services for specific populations.

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