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Consumer direction and control

Most people who require the help of others to perform basic tasks like bathing or dressing. prefer to retain control over these services, if they can. They prefer to live at home.

But there's still a bias in public policy toward providing services only in large institutions. Administrators often distrust people to be in charge of their own personal assistance.

The idea of "consumer direction" is unnerving to many state Medicaid officials and administrators. A study released in January 1999 found that state administrators by and large distrust programs that give money directly to individuals to hire their own personal assistance. The study, conducted by the National Institute on Consumer-Directed Long Term Services, surveyed 257 administrators of state departments of aging, Medicaid, mental retardation/developmental disabilities and vocational rehabilitation in all 50 states to get an idea of what they thought of giving people funds to hire personal assistance workers.

Nearly half of the state administrators in the study said they had concerns about "the lack of quality assurance" when people hire their own assistants.

They were also worried about fraud and abuse in the programs; and they felt that running programs that let people hire their own assistants "could be difficult to implement."

Agency-directed home "health care" services fall under the medical model; consumer-directed personal assistance services are based on the independent living model.

"Cash and Counseling" programs are testing the consumer direction model.

Through the Cash and Counseling demonstration projects, the U.S. Dept. of Heath and Human Services is seeking to confirm the worthiness of what the independent living movement has wanted for years -- control of one's own personal assistance services.

In 1996, four states -- Arkansas, Florida and New Jersey -- were funded by The Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services "to test the idea of giving Medicaid recipients with disabilities the choice of traditional services or cash along with counseling assistance. "

The University of Maryland Center on Aging was designated to be the national program office responsible for directing and coordinating the demonstration and providing technical assistance to the states, in collaboration with the National Council on the Aging, Inc.

The project's evaluation component is being conducted by Mathematica Policy Research, Inc. Several final project reports are now available at the Mathematica website.

Read an overview of the Cash and Counseling Project at

Learn more about the Cash and Counseling programs from the University of Maryland Program on Aging.






The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.
Consumer Choice and Control:
Personal Attendant Services and Supports in
Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999

Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

"Understanding Medicaid Home and Community-Based Services: A Primer" -- from the U.S. Dept. of Health and Human Services, available at

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services


How States' "Nurse Practice" Acts work against consumer direction -- from the January, 1999 Ragged Edge magazine






Expert sources

Nursing home data

Abuse of seniors under-reported, says study

The Institutional Bias of Public Policy

Consumer Direction in Personal Assistance

Study Validates Consumer Control's Superiority

In-Home Services and Safety

In-home services: Implementing the Olmstead decision

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