Self-Directed Supports for Individuals with Autism, Intellectual, and Developmental Disabilities: Results from a Preliminary Inquiry into 1915c and 1115 Medicaid Waiver Programs

Background and Purpose:  Originally introduced in the early 1990s, self-directed models of service provision are designed to meet the needs of individuals with intellectual and developmental disabilities (IDD) by enabling them to exercise substantial control over what supports they receive and who provides those supports (Scala & Nerney, 2000; Mosely, 2001). Self-directed services are rapidly transitioning from demonstration projects to the preferred method of providing services to individuals with IDD. In the most recent national study of the proliferation of self-direction across the states, 34 states had some degree of self-direction, though only 13 had fully operational programs that offered both individualized budgets and consumer control of spending; the two essential components of self-direction (Walker, Hewitt, Bogenschutz & Hall-Lande, 2009).  Since then, self-direction has expanded to become a prominent fixture on the landscape of disability policy reforms. This study seeks to understand the extent to which state Medicaid waiver programs incorporate self-directed services and the differences in implementation between the states, offering the first major overview of the rapidly changing landscape of self-direction in over five years. 

Methods: Using the Centers for Medicare and Medicaid Services (CMS) repository of 1915c and 1115 Medicaid waivers, researchers analyzed approved Medicaid waiver documents (N=112) for all available states based on criteria identified from previous research on IDD waivers.  Waivers of interest included those specifically for people with IDD or autism. The results of the first scan of the CMS waiver repository was followed by a scan of individual state websites, which sometimes reflect updated waiver information.

Policy documents were scanned for a series of factors, including, but not limited to, whether self-direction is permitted through the waiver, whether an individualized budgeting process is used, whether people with IDD may direct their own spending, whether there is authority for the individual with IDD to hire/manage their own staff, and whether spending is restricted to only certain services. This presentation will summarize the results of this scan.

Results: Based on the CMS data, 40 states include some degree of self-direction in their IDD services.  Although there is great variation in adherence to the self-directed model, the majority of waivers (69%) include both budget and employer authorities.  Restrictions on these authorities are present in every state, but the majority of waivers do not impose wage caps (76%), limit employer or budget authority for certain services (68%), or limit the categories of services that may be used (61%).  Many waivers, however, continue to restrict access based on residential arrangement (51%). 

Conclusion and Implications: The self-directed policy and services landscape has changed substantially since the last comprehensive study in 2009. Notably, the majority of states now include both budgetary authority and employer authority, in sharp contrast to previous studies (Greene, 2007; Walker et al, 2009). Overall, there is variable but significant adherence to the self-directed model of services, which is a positive step in promoting the self-determination of individuals with IDD in most parts of the country.  Recommendations for development of future policy will be offered.