Independent Living Research

RESEARCH INFORMATION ON INDEPENDENT LIVING
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Volume 2, Issue 7

Consumer-Directed Care

“Consumer-directed” care returns care dollars to the people with disabilities who use them. In this growing trend, consumers are responsible for their care, including recruiting, hiring, training, and supervising their own personal care attendants. To support the movement, the U.S. Department of Health and Human Services offers an electronic checklist and database, "Independence Plus," designed to help states develop consumer-directed services at http://cms.hhs.gov/independenceplus/

State and federal government officials say the move is to improve people’s lives, and lower cost is a secondary motivation. Disability rights advocates support it, saying people with disabilities often only have one agency to get services from and agency service delivery creates the assumption that people with disabilities are incompetent and dependent.

Currently, programs vary in their amount of consumer direction and balance their accountability and liability with consumer choices. Using World Institute on Disability 1984 and 1988 surveys, case studies from six states, and a 1990 survey designed by the Commonwealth Fund Commission on Elderly People Living Alone, one research study came to these conclusions:

More money is saved with independent providers because agencies charge for overhead costs and profits.
Use of independent services providers was associated with increased hours of service per client.
Consumer choice and satisfaction were maximized when clients could directly hire their own assistants.

However, the study also found access to independent service providers does not guarantee consumer choice, nor control of attendant services management.

Subsidized care may be provided through Medicaid’s 1915c Aged and Disabled Medicaid Waiver, Title XIX PCS optional benefit, Cash and Counseling Evaluation Demonstration projects, or other means.

The HCBS waiver enacted in 1981 allows states to use Medicaid funds for institution alternatives. The Disability Statistics Center in San Francisco studied the use of HCBS waivers by looking at annual state reports and findings from 1992 to 1997 and found:

The waiver program grew about 19% each year. In 1992, there were 235,668 waiver participants and in 1997, 561,510 participants.
Costs grew more than $5.7 billion with an annual growth rate of 22%.
Waivers primarily assist people with mental retardation or other developmental disabilities and people who are aged and disabled.
The most-used services were for respite, home health, and personal care.

A growing number of states are putting consumer direction into their programs. For example, through the organization Concepts for Independence, the state of New York allows people to directly hire their own personal care assistants. Consumer-run Concepts for Independence acts as the employer, gets money from Medicaid, and funnels services through its program.

Andrew Batavia predicted that aging baby boomers would insist on more use of the independent living model for personal care. Organizations and service providers who benefit from the medical model form of care will resist this insistence. Wrote Batavia, "Ultimately, this issue is likely to be resolved through the political process. If the state legislatures, and possibly the U.S. Congress enact legislation that allows people with disabilities to choose their model of long-term care and create an equitable and efficient playing field, the market decisions for people with disabilities will ultimately decide which is the best model. This would be a preferable solution to having government or the courts decide the highly personal issue of which model to use for one's long-term care."

Measures introduced to Congress to promote consumer-directed care include the Medicaid Community Attendant Services and Supports Act to create a national system of home and community-based services, The Money Follows the Person Act, and the Long-Term Care Security and Retirement Act that gives tax credits and tax incentives to caregivers and employers.

Cindy Higgins, The Research and Training Center on Independent Living, The University of Kansas, 1000 Sunnyside Ave., Room 4089 Dole Center, Lawrence, KS 66045-7555, (785) 864-4095, E-mail: [email protected]. This is project funded by the National Institute on Disability Rehabilitation Research grant #H133A980048.

Information for this review came from the interactive Research Information on Independent Living (RIIL) database at www.GetRiil.org, which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment.

RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR