Assessing Privacy: What Aspects of Privacy Are Reported and Whose Experiences Are Not Represented?

Standards of privacy are required for people with intellectual and developmental disabilities (IDD) receiving Medicaid Home and Community-Based Services (HCBS). The National Core Indicators In-Person Survey is one tool that people with IDD use to assess the presence, absence, and quality of their privacy. This study describes privacy assessments from a sample of 2,196 service users with IDD from 2021-2023 and shows that patterns of missing assessments are predicted by level of intellectual disability and nonverbal forms of communication. Missing privacy data, especially from those at greatest risk, poses a threat to community integration for people with IDD and requires the development of more accessible methods for collecting personal outcome data.