Share This Post

National Disconnect in Goals for Participant Direction

By Carli Friedman, CQL Director of Research

Participant direction is a model where people with intellectual and developmental disabilities (IDD) control and direct their services. Participant direction results in increased choice, control, satisfaction, independence, empowerment, and quality of life (Heller et al., 2012; Swaine et al., 2016; Timberlake et al., 2014). Participant direction also represents a paradigm shift as it transforms people with IDD from passive recipients of services to active directors of services. As a result of these benefits, the Centers for Medicare and Medicaid Services (CMS) has been pushing states to expand participant direction, particularly in Home and Community Based Services (HCBS).

Because of the importance of participant direction as well as the recent shifts toward this model of service delivery, the aim of this study was to examine Medicaid HCBS IDD waivers, the largest providers of long term services and supports (LTSS) for people with IDD (Braddock et al., 2017), to determine how states were utilizing participant direction across the nation in fiscal year (FY) 2015.

Findings revealed less than a quarter of services provided in FY 2015 — approximately 600 out of the 2,850 services — were eligible for participant direction. Moreover, participant direction varied widely by service category (figure 1). In fact, those categories with the largest proportion of participant direction were often the least heavily funded and least frequently offered, and visa versa.

Percent of Service Category Eligible for Participant Direction

CMS requires states to set a goal of the number of waiver participants who will utilize participant direction. Nationally, the goal for participant direction was only 12% of all FY 2015 IDD waiver participants. Moreover, only one state (Ohio) had a goal of 100% people with IDD involved in participant direction in their waivers (see figure 2).

HCBS IDD Waiver Goals for Participant Direction by State (FY 2015)

This study revealed a disconnect between the move toward participant direction, and states’ goals for participant direction. Widespread utilization of participant direction requires states expand the opportunities of people with IDD to direct their waiver services as well as increase their expectations about the abilities of people with IDD.


  • Braddock, D., Hemp, R., Tanis, E. S., Wu, J., & Haffer, L. (2017). The state of the states in intellectual and developmental disabilities: 2017 (11th ed.). Washington, DC: The American Association on Intellectual and Developmental Disabilities.
  • Heller, T., Arnold, K., McBride, E., & Factor, A. (2012). Consumer-directed support: Impact of hiring practices on adults with I/DD and families. International Journal of Integrated Care, 12(9).
  • Swaine, J. G., Parish, S. L., Igdalsky, L., & Powell, R. M. (2016). Consumers’ and workers’ perspectives about consumer-directed services in the United States. Disability and Health Journal, 9(3), 464-471.
  • Timberlake, M. T., Leutz, W. N., Warfield, M. E., & Chiri, G. (2014). “In the driver’s seat”: Parent perceptions of choice in a participant-directed Medicaid waiver program for young children with autism. Journal of Autism and Developmental Disorders, 44(4), 903-914.

This article is a summary of the following journal manuscript: Friedman, C. (2018). Participant direction for people with intellectual and developmental disabilities in Medicaid Home and Community Based Services waivers. Intellectual and developmental disabilities, 56(1), 30-39.