Families of children and youth with special healthcare needs who speak Spanish or Chinese at home face additional barriers to obtaining diagnoses, services, and support, according to a new study led by Kathleen McGrath, M.S.S, Ph.D. candidate at CUNY Graduate Center and senior research coordinator at Albert Einstein College of Medicine. The findings, published in June in Developmental Disabilities Network Journal, underscore the need for family-centered systems of care.

The study examined the experiences of 136 parents of 181 children with chronic physical, developmental, behavioral, or emotional conditions. Researchers analyzed discussion groups and interviews with English-, Spanish-, and Chinese-speaking families focusing on the diagnostic process, access to services, community integration, and social support.

Families described healthcare and educational systems as complex, fragmented, and difficult to navigate. Delayed diagnoses were especially common for less visible conditions such as autism spectrum disorder and attention-deficit/hyperactivity disorder. Across all groups, parents reported that persistence, self-advocacy, and trusting their instincts were often critical to obtaining evaluations and services.

Researchers also found that immigrant and multilingual families often relied on community networks, parent support groups, and cultural or religious organizations to build resilience and obtain information and assistance.

Senior author Joanne F. Siegel, M.S.W., L.C.S.W., principal educator of pediatrics and co-director of Einstein's Rose F. Kennedy University Center for Excellence in Developmental Disabilities, collaborated on the study with colleagues from Einstein and the Icahn School of Medicine at Mount Sinai.