Self-Direction in Medicaid Home- and Community-Based Services

Abstract

Self-direction allows people with intellectual and developmental disabilities (IDD) to control and direct their services and supports. This study's aim was to examine how states across the United States implemented self-direction in their Medicaid Home- and Community-Based Services (HCBS) 1915(c) waiver programs for people with IDD in fiscal year (FY) 2021. We found 80% of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13% people with IDD receiving HCBS self-direct (n = 113 692). We found, in FY 2021, 29% of services could be self-directed and 36% of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9% to 47.5% of people with IDD receiving HCBS. Moreover, projected spending for services eligible for self-direction varied by state from 0.1% to 100%. We believe everyone that wants to self-direct should have the opportunity to do so.