Trends in Privacy of Adults With Intellectual and Developmental Disabilities Before and After the Home and Community-Based Services Final Rule

In 2014, the U.S. Centers for Medicare & Medicaid Services (CMS) launched the Home and Community-Based Services (HCBS) Final Rule intended to improve the quality of HCBS for people with disabilities. The Rule focuses on improving outcomes through person-centered services and supports. These outcomes include privacy and dignity. This study reviewed state compliance with the Final Rule by examining statewide transition plans and investigating the Final Rule’s impact on privacy outcomes of adults with intellectual and developmental disabilities (IDD). We compared cross-sectional National Core Indicators® (NCI®) Adult Consumer Survey (ACS) 2012 to 2013 and Adult In-Person Survey (IPS) 2018 to 2019 data. Privacy (people letting them know before entering their home; being alone with friends/visitors at home) increased after Final Rule implementation. Individuals in the 2018 to 2019 group had 36% and 29% higher odds of being asked for permission to enter their home and of being alone with friends/guests, respectively. Age, gender, severity of intellectual disability, and several co-occurring conditions were also predictive of improvement in privacy.