The Case for Medicaid Self-Direction: A White Paper on Research, Practice, and Policy Opportunities

Acknowledgments

The National Council on Disability wishes to express its deep appreciation to the National Association of State Directors of Developmental Disability Services team that conducted the research and writing for this paper: Robert Gettings, Charles Moseley, and Nancy Thaler.

Contents

Executive Summary

In recent years, self-direction has emerged as a game-changing strategy in organizing and delivering Medicaid funded services, a means of affording people with disabilities enhanced opportunities to live fulfilling lives of their own choice in local communities. Yet, despite the growth in self-directed services, many key questions remain to be answered about the most effective ways of promoting individual choice and control within a Medicaid funding environment.


To assess the current state of knowledge and pinpoint remaining gaps that need to be filled, in the fall of 2011 the National Council on Disability commissioned a study of Medicaid-funded self-directed services. This paper summarizes the key study findings, conclusions, and recommendations, and more specifically—

  • Traces the history of self-directed services in the United States and its emergence and subsequent growth within the Medicaid policy arena;
  • Examines the fundamental concepts that undergird a self-directed approach to organizing and delivering community-based long-term services and supports;
  • Reviews the basic components of self-directed services as spelled out in federal Medicaid policy;
  • Summarizes the findings and conclusions from existing studies of the cost-effectiveness of self-directed services;
  • Explores the ramifications of the growing use of Medicaid managed care arrangements for the future of self-directed services and supports; and
  • Recommends strategies for improving the accessibility and quality of self-directed Medicaid services and supports.

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