From the Institution to the Community: Exploring Physical Restraint in Home and Community-Based Services

Adults with intellectual disabilities (IDs) have been institutionalized for centuries where, in the earliest practices, they were denied their human rights, detained in cells, and restrained with chains and shackles. In the 1980s, the Centers for Medicare and Medicaid Services (CMS) implemented Home and Community-Based Services (HCBS) waivers to offer living environments alternative to institutions. However, after more than thirty years of persisting institutional qualities within HCBS, CMS implemented the HCBS Settings Rule in 2014, recognizing the need for policies and procedures to define the setting requirements. The HCBS Settings Rule delineates required standards for these settings and acknowledges the rights of individuals receiving waiver services in HCBS. Among the rights acknowledged in the HCBS Settings Rule, the right to freedom from restraint is declared. While restraining with chains is in the distant past in disability services, restraint use may be permitted in any HCBS waiver setting, and restraining persons with ID continues in most U.S. states. This study explores how two states that authorize restraint use for adults with intellectual disabilities living in community settings implement restraint use procedures and what the self-determination implications are. Findings show that states have nearly full discretion for their restraint procedures, resulting in variations in procedure requirements, training, and type of restraints permitted in each state. This knowledge can further the understanding of restraint use practices and their implications on the self-determination of persons with ID living in the community.