Self-direction is a service delivery method that allows people with intellectual and developmental disabilities (IDD) to control the services they receive, often including where money is spent and to hire their own staff. Self-direction is associated with increased satisfaction, choice, and outcomes. For these reasons, the aim of this study was to examine how states across the nation allocate self-direction in their Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I analyzed HCBS 1915(c) waivers for fiscal year (FY) 2021.
States are required to set goals for how many people with IDD receiving HCBS will self-direct. While 80% of states allowed people with IDD to self-direct in their HCBS waivers, across the nation the goal was to have only 13% of people with IDD receiving HCBS self-direct. Despite efforts to make HCBS more person-centered, such as the HCBS Settings Rule, this goal barely changed from my analysis of FY 2015, when it was 12%. However, some states had more ambitious goals than others when it came to self-direction, with New Mexico (48%), Nebraska (45%), and New Jersey (40%) having the largest goals.
State Goals for Self-Direction of HCBS
Among the waivers that permitted self-direction, many states had additional requirements for people with IDD which could limit their ability to self-direct. For example, it was common to limit self-direction to only those who lived in their own homes or family homes. In addition, the types of services that most frequently allowed self-direction, such as individual goods and services, and education, were also some of the services which were least frequently included in HCBS waivers. However, there were often other flexibilities which would allow more people with IDD to participate in self-direction, such as the ability for people with IDD to select who they wanted to self-direct on their behalf, such as a family member or friend.
“Given the vast differences found across states in this study, the mediocre goals for self-direction more broadly, and the advantages of self-direction, states should expand and strengthen their self-direction policies and programs in HCBS… much more work is necessary to ensure people with IDD’s rights to choice are upheld, and to honor self-advocates’ well-fought advocacy to control their lives” (Friedman, 2024, pp. 9-10).
This article is a summary of the following journal manuscript: Friedman, C. (2024). Self-direction in Medicaid Home- and Community-Based Services. Journal of Policy and Practice in Intellectual Disabilities, 22(1), e12531. https://doi.org/10.1111/jppi.12531
States Aim to Only Have 13% of People with IDD Self-Direct HCBS