Examining ‌least Restrictive� Practices in Home and Community Based Care for Youth with Complex Mental Health Needs

Background: Approximately 5 to 6% of children and youth experience significant behavioral health concerns that disrupt their functioning in significant ways. Many of these youth receive care through psychiatric inpatient or residential settings. In 2016, approximately 23,000 children and youth were served in these settings. Avoidable residential placement can be disruptive and stressful to children and families and is non-compliant with mandates to provide supports in the least restrictive settings possible under the Americans with Disabilities Act (ADA). To reduce family distress associated with use of psychiatric out of home placements, and to increase compliance with ADA mandates, one in five states use 1915(c) Home and Community Based Services (HCBS) Medicaid waivers to expand their community-based treatment alternatives for these youth. However, the characteristics of these models—and how restrictive they are in comparison to inpatient or residential alternatives—is not well documented. To understand the level of restrictiveness in HCBS programs for this population, this study sought to identify and characterize the facilities providing HCBS services and program mandates regarding the use of seclusion and restraints on children and youth participants.

Methods: This study used policy mapping techniques to organize data from state applications for 1915(c) HCBS Waiver programs for children with mental health needs. Waiver applications were collected for 19 states and drew from applications filed between 2008 and 2023. Analysis identified and characterized the facilities authorized by states to provide HCBS and states’ guidelines and safeguards around the use of seclusion and restraint in HCBS programs. Findings were tabulated by state and year.

Findings: States’ use of more and less restrictive facilities as providers within HCBS programs and their authorization for use of seclusion and restraints varied significantly across states, and patterns of use changed over time. Eight of the 19 states with HCBS waiver programs for youth with mental health needs did not use any out-of-home facilities to provide HCBS services. Of the remaining states, four included residential facilities as providers of services and five included foster homes, boarding homes, supported living facilities, or crisis homes to provide care. Two states provided services in group homes and crisis shelters. Six of the 19 states provided no authorization for the use of seclusion or restraint on program participants. Nine allowed the use of seclusion and one allowed the use of isolation. Four states allowed for personal restraints but no mechanical restraints, 4 states allowed for the use of mechanical restraints but not personal restraints, and 4 states allowed both. Six states allowed for chemical sedation.

Conclusion: Though based in philosophies of least restrictive care, most HCBS programs for children and youth with complex mental health needs provide services through restrictive facilities and allow the use of restrictive interventions, including chemical and mechanical restraint. Greater attention to the provision of trauma-informed care in public mental health care suggests that the use of restraint and seclusion in these programs warrants additional research. Wider understanding of the gap between what program policies allow and what occurs in services is needed.