U.S. Department of Health and Human Services

Easing the Burden of Caregiving: The Impact of Consumer Direction on Primary Informal Caregivers in Arkansas

Executive Summary

Leslie Foster, Randall Brown, Barbara Phillips and Barbara Lepidus Carlson

Mathematica Policy Research, Inc.

August 2003

This report was prepared under contract #HHS-100-95-0046 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the University of Maryland. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.shtml or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is: Pamela.Doty@hhs.gov.

ACKNOWLEDGMENTS

Numerous individuals at Mathematica Policy Research, Inc. (MPR) made this paper possible. Nora Paxton and Amy Zambrowski programmed the analysis, and Valerie Cheh provided thoughtful comments on an earlier draft. Walter Brower edited the paper, and William Garrett produced it.

The paper has also benefited greatly from the thoughtful comments and suggestions of individuals outside MPR. In particular, we appreciate input from the Cash and the Counseling Demonstration and Evaluation management team, including Kevin Mahoney, Mark Meiners, Lori Simon-Rusinowitz, and Marguerite Schervish and others at the Centers for Medicare & Medicaid Services (CMS); and external reviewers A.E. Benjamin (UCLA School of Social Welfare), Rosalie Kane (University of Minnesota School of Public Health), and Robyn Stone (Institute for the Future of Aging Services).

The opinions presented here are those of the authors and do not necessarily reflect those of the funders (The Robert Wood Johnson Foundation, and the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation), the Cash and Counseling National Program Office, the demonstration states, or CMS.

EXECUTIVE SUMMARY

Informal caregivers provide vital personal care and other supportive services to Medicaid beneficiaries who have physical dependencies, so promoting their well-being is an important policy objective. Caregiver well-being could be greatly affected by the amount, types, and quality of paid supportive services that beneficiaries receive in addition to informal help. This study compares the experiences of informal caregivers under two models of paid supportive services that were tested in the Arkansas Cash and Counseling demonstration. Under the experimental model, Medicaid beneficiaries could receive an allowance to direct their own services. Under the traditional model, beneficiaries relied on home care agencies for services.

A Rigorous Design and Comprehensive Survey Data Provided Definitive Evidence.

Our analysis included 1,433 caregivers who were providing the most informal assistance to their care recipients when recipients were randomly assigned to direct their own personal care services as treatment group members, or to rely on agency services as control group members. Care recipients in the treatment group could alter their service use and potentially affect their primary informal caregivers by hiring them as workers (as over half did); by using them as representative decision makers; by adjusting the amount, timing, and types of services they used; by buying assistive devices or home modifications; and by using the program's counseling and fiscal services to varying extents.

We constructed outcome variables from computer-assisted telephone interviews that were conducted with caregivers between February 2000 and April 2002, about 10 months after random assignment. We asked caregivers, who typically were related to their care recipients, factual questions about the frequency, amounts, timing, and types of the assistance they provided, and about their labor force participation and income. We asked for their opinions about the quality of their relationships with care recipients; their satisfaction with care recipients' personal care services; and their own emotional, financial, and physical well-being, and health. To estimate program effects, we compared these outcomes for caregivers of treatment group members with those for the caregivers of control group members, while controlling for care recipient and caregiver characteristics.

Caregivers Reported Greater Well-Being Under Consumer Direction.

On average, the caregivers of self-directing care recipients (treatment group members) provided fewer hours of assistance than their control group counterparts provided, and they were less likely to report high levels of physical, financial, and emotional strain. Moreover, the caregivers of self-directing care recipients worried less about insufficient care and safety and were more likely to be very satisfied with recipients' overall care arrangements. These caregivers were also less likely to report that caregiving impinged on their privacy, social lives, and job performance. Compared with control group caregivers, those who helped self-directing care recipients said they themselves were in better health and were less likely to report that their health was harmed by caregiving. Not surprisingly, these caregivers were also much more likely than their control group counterparts to be very satisfied with their own lives.

These findings indicate that when Medicaid beneficiaries wish to direct their personal care services and do so, both they and their primary informal caregivers benefit markedly. Improvement comes about because some informal caregivers become paid workers and because beneficiaries make service arrangements that seem to alleviate caregiver burden. In both cases, the benefits to caregivers, Medicaid beneficiaries, and perhaps the Medicaid program, are substantial.