M. Pilar Trelles, M.D.
Fellow in Access to Care
Alexander Kolevzon, M.D.
Icahn School of Medicine at Mount Sinai
Improving Access to Care for Minority Youth with Autism Spectrum Disorder Using a Family Peer Advocate Model
Low-income minority youth with autism spectrum disorder (ASD) are consistently underserved by the existing mental health systems of care. Family Peer Advocates (FPAs) have personal experience caring for a child with special needs and are used across healthcare to enhance treatment utilization. Caregivers of children with ASD report significant level of stress, particularly when associated with attention deficit/hyperactivity disorder (ADHD) and disruptive behaviors. The objective of this study is to facilitate access to care for children with ASD by establishing an FPA model of care. The central hypothesis, based on our preliminary data, is that caregiver focused contact with an FPA will reduce caregiver strain and improve quality of life in affected families by increasing treatment utilization, normalizing distress, and promoting positive parent-child interactions. In addition, we will evaluate the impact of ADHD symptoms and caregiver strain on treatment response.
We will enroll seventy families of African-American or Latino descent using a randomized, wait-list controlled design over six months. Results will (1) validate the effectiveness of FPAs in a minority sample of children with ASD by providing an intervention that improves caregiver strain and family quality of life, (2) support the role of FPAs in improving functional outcomes in underserved children with ASD and (3) provide crucial information on the role of ADHD as a moderator of treatment response and its effect on family stress and quality of life. Knowledge gained will provide invaluable information to further characterize this underrepresented population and identify additional areas of need.