Stakeholders’ Home and Community Based Services Settings Rule Knowledge

Abstract

Medicaid Home and Community Based Services (HCBS) waiver programs provide the majority of long-term services and supports for people with intellectual and developmental disabilities (IDD). Relatively new (2014) HCBS rules (CMS 2249-F/2296-F) governing these programs require meaningful community integration of people with disabilities who receive services under this Medicaid program. States are required to develop and submit transition plans, which document how their programs will meet the so-called settings rules. Public comment periods provide advocates the opportunity to impact states’ rules by ensuring that plans are truly community based. Yet the lengthy and technical description of the rules may be inaccessible for people with disabilities and their allies. Because knowledge of the HCBS settings rules can be crucial for people with IDD to enable them to access their rights, the aim of this study was to explore HCBS settings rules knowledge of people with IDD and key stakeholders. Our findings confirmed that there is a need to make the HCBS settings rules more accessible to those most affected by the changes—people with IDD and family members of people with IDD. Doing so is a necessary first step to promote advocacy regarding its implementation.