Robin L Dodds, Hilary Wu, Christina Toapanta
Program data from a large California Regional Center (RC) showed school-aged clients (5 to <22 years) under-utilized authorized services, with language factors implicated. We conducted semi-structured focus groups/interviews with parents/caregivers (n = 17) from May to August 2024, including a culturally adapted Spanish version. Transcripts underwent modified grounded-theory analysis. Seven themes emerged: advocacy, family stress, positivity/hope, knowledge gaps, obtaining/using services, service coordinators, and school issues. Parents reported persistent advocacy amid time, financial, and administrative burdens; uneven information (often peer-driven); variable coordinator responsiveness; reimbursement/communication gaps; and school shortages. Utilization hinges on navigability, language access, reimbursement design, and RC-school coordination. Recommendations include standardized bilingual onboarding, direct-pay/vendorized options, mentored coordinator onboarding/warm handoffs, and parent-to-parent navigation supports.