Participant Direction for People With Intellectual and Developmental Disabilities in Medicaid Home and Community Based Services Waivers.

Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to examine if and how states permitted participant direction in Medicaid HCBS 1915(c) waivers for people with IDD. We analyzed HCBS waivers from across the country to determine frequency of participant direction, expenditures directed toward participant direction, and states' goals for utilization of participant direction. Our findings revealed a disconnect between the large number of waivers that allowed participant direction, and states' extremely low goals for actual utilization of participant direction.