Self-Advocacy Services for People With Intellectual and Developmental Disabilities: A National Analysis

Self-advocacy plays an important role in facilitating the empowerment of people with intellectual and developmental disabilities (IDD), and helps people with IDD develop the skills necessary for the participant direction of services. The purpose of this study was to examine Medicaid Home and Community Based Services (HCBS) 1915(c) waivers across the nation to determine how states were utilizing self-advocacy services for people with IDD. Findings revealed approximately half of waivers provided self-advocacy services; however, less than .01% of waiver spending was projected for stand-alone self-advocacy services. States need to expand the provision of self-advocacy services for people with IDD in order to strengthen their ability to direct their waiver services and exercise their rights.

Participant-Direction in a Culturally Diverse, Rural Population: The Hawaìi Community Living Program

The Hawaii Community Living Program was a participant-direction pilot project aimed at rural, multicultural, and community-dwelling older adults at risk of institutionalization. This evaluation examined participant outcomes, and explored the role of culture, health literacy, and rural settings in participant-direction programs. The program enrolled 91 participants and, of these enrollees, helped 84 (92.3%) participants avoid institutionalization and spend down to Medicaid. Findings indicated that Program Coaches needed to be culturally appropriate and creative in arranging for services and the delivery of goods and supplies. Results suggested that participants need to be health literate to direct their care, but further research is needed.