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National Inventory of Self-Directed LTSS

Published: September 28, 2020
Authors: Kathleen Ujvari, Merle Edwards-Orr, Molly Morris, Casey Deluca, and Mark Sciegaj

This paper describes the key findings and emerging trends in self-direction based upon data and information collected in the 2019 National Inventory of Publicly Funded Self-Directed Long-Term Services and Supports (LTSS) Programs in the United States.  The National Inventory was conducted to support the development of the Self-Direction indicator in the 2020 LTSS State Scorecard which reports national and state-level data on the number of people receiving self-directed services per 1,000 people with any disability in the state. 

Self-directed services enable consumers and their families to decide how, when, and by whom care is provided and is one of six LTSS State Scorecard indicators in the Choice of Setting and Provider dimension.  This paper highlights five key findings including continued growth in the number of self-direction programs and number of participants enrolled in these programs; most programs enroll multiple populations with an increased number of programs serving older adults and adults with physical disabilities; and flexible program features are on the rise. 

This paper also highlights five emerging trends including feeder programs; trends in managed LTSS; Veteran-Directed Care programs; programs serving people with serious mental illness; and Electronic Visit Verification. 

The information provided in this paper highlights action that states have taken to continue advancing opportunities to provide consumers and families more opportunities to self-direct and manage their own care needs.