Consumer-Directed Health Care: How Well Does It Work?

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Lex Frieden, Chairperson
October 26, 2004


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The views contained in the report do not necessarily represent those of the administration, as this and all NCD reports are not subject to the A-19 executive branch review process.


October 26, 2004

The President
The White House
Washington, D.C. 20500

Dear Mr. President:

The National Council on Disability (NCD) is pleased to submit to you this report, titled Consumer-Directed Health Care: How Well Does It Work? Under its congressional mandate, NCD is charged with the responsibility to gather information on the implementation, effectiveness, and impact of federal laws, policies, programs, and initiatives that affect 54 million Americans with disabilities. In 2003, NCD decided that it was time to evaluate the evidence base for the nation's consumer-directed health care efforts. NCD determined that it was necessary to assess the nature, scope, and quality of consumer-directed health reform efforts, to the extent that federal and state policymakers rely on the outcomes of consumer-directed health reform efforts for the direction such outcomes imply for future federal health care reform efforts.

Federal and state governments and advocates have worked together over the past 20 years to explore the use of consumer-directed home and community services and long-term personal assistance services. Most recently, the Olmstead Supreme Court decision has provoked a wave of institution-to-community planning among states that are responsible for ensuring that Medicaid recipients are provided (health) care in the most integrated setting appropriate. Your Administration has included consumer-direction as a pillar of its legislative and program-based initiatives.

This report is a unique piece of policy research cutting across multiple departments and entities of federal and state governments. NCD's research offers a clear picture of the strengths and weaknesses of our Federal Government's current research agenda related to consumer-directed health care for Americans with disabilities. It sheds light on the relationship between consumer-directed health care and practice. And it provides a basis for policymakers who use health research evidence to inform their policy decisions (e.g., about MiCASSA, Money Follows the Person, Olmstead, and Real Choice Systems Change Grants) in keeping with the intent of your Administration's New Freedom Initiative (NFI).

In support of the NFI and of progress in the implementation of consumer-direction policy initiatives, I pledge our support to your Administration's commitment to ensuring that equality of opportunity, full participation, independent living, and economic self-sufficiency become realities in the lives of Americans with disabilities. Under your leadership, I remain confident that we can continue to build an America where all citizens live healthy, independent lives in the community of their choice.


Lex Frieden

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

National Council on Disability Members and Staff

Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas

Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio

Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Pamela O'Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk


The National Council on Disability (NCD) expresses its deep appreciation to Carol Tobias, Kate Brown, Debby Allen, Kate Tierney, Regina Murphy, and Sarah DuRei at the Health and Disability Working Group, School of Public Health, Boston University, for their assistance in drafting this seminal report.