Federal Project Grant Award Summary

Duke University's Office of Research Administration received a $678,231 project grant awarded March 1, 2026, by the National Institute on Aging under the Aging Research program (CFDA 93.866). The five-year research initiative, concluding February 28, 2031, examines the effects of paid family caregiving versus professional aides on Medicaid Waiver participants with intellectual and/or developmental disabilities (I/DD) across the lifespan. The study uses North Carolina's Innovations Waiver as a case study to understand how self-directed care arrangements affect the ability of individuals with I/DD to remain in home and community-based settings rather than facility-level care.

The research delivers three primary products: (1) a longitudinal analysis of Medicaid administrative data spanning 9+ years to characterize the prevalence and patterns of paid family care arrangements by self-direction status, individual factors, geographic location, and pre/post-COVID-19 trends; (2) qualitative research findings incorporating direct perspectives from individuals with I/DD, family caregivers, paid family caregivers, paid aides, and waiver program experts through photo elicitation, case studies, and focus group interviews; and (3) comparative effectiveness analyses evaluating outcomes of paid family care versus paid aide care on person-centered indicators. This foundational state-level research addresses gaps in national data regarding self-direction status and personal care arrangements for individuals with I/DD.