U.S. Department of Health and Human Services

The Effects of Cash and Counseling on the Primary Informal Caregivers of Children with Developmental Disabilities

Executive Summary

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

Mathematica Policy Research, Inc.

April 2005

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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/_/office_specific/daltcp.cfm 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.

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

ACKNOWLEDGMENTS

This report has benefited greatly from the thoughtful comments and suggestions of several people. In particular, we appreciate input from external reviewers Rosalie Kane (University of Minnesota School of Public Health), Charlie Lakin (University of Minnesota Institute on Community Integration), and Robyn Stone (Institute for the Future of Aging Services), and from Kevin Mahoney and Marie Squillace of the Cash and Counseling Demonstration and Evaluation management team.

In addition, several colleagues at Mathematica Policy Research, Inc., made the report possible. Nora Paxton and Amy Zambrowski programmed the analysis, and Henry Ireys provided comments on an earlier draft. Patricia Ciaccio edited the report, and Jill Miller produced it.

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 Centers for Medicare & Medicaid Services, or the demonstration states.

EXECUTIVE SUMMARY

Cash and Counseling Is a Promising Model of Medicaid Supportive Services

Because parents and other relatives provide vital, unpaid personal care to children with developmental disabilities, promoting the well-being of these informal caregivers is an important policy objective. The paid supportive services that children receive in addition to unpaid care could profoundly affect the informal caregivers who help them most. This study assesses the effects of consumer direction on the experiences and well-being of the primary informal caregivers of children who participated in Florida's Cash and Counseling demonstration. Instead of Medicaid home and community-based services (HCBS) waiver benefits, the demonstration program, Consumer Directed Care (CDC), provided a monthly allowance and let parents hire providers and manage the other services and goods their child needed.

A Rigorous Design and Comprehensive Survey Data Provided Definitive Evidence

Our analysis included the 829 caregivers--mostly mothers--who were providing the most unpaid assistance to children when the children were randomly assigned to participate in CDC (the treatment group) or to continue receiving HCBS waiver benefits as usual (the control group). We hypothesized that the amounts, types, and quality of services and goods that parents arranged for their children under CDC, with the support of the program's counseling and fiscal services, would affect caregivers' emotional, physical, and financial well-being. Becoming a child's paid worker or the "representative" responsible for managing a child's care also could affect these outcomes.

We constructed outcome variables from computer-assisted telephone interviews conducted with caregivers between April 2001 and June 2002, about 10 months after children's random assignment. We asked caregivers factual questions about the frequency, amounts, timing, and types of assistance they provided, as well as about their labor force participation and income. We asked their opinions on the quality of their relationship with the child they assisted, their satisfaction with the child's overall care arrangements, and their own health and emotional, physical, and financial well-being. To estimate program effects, we compared these outcomes for the caregivers of treatment group children with those for the caregivers of control group children. Regression models controlled for the baseline characteristics of children and the demographic characteristics of caregivers.

Caregivers Reported Greater Well-Being Under CDC

At the time of our interviews, treatment group caregivers still provided as much overall assistance as did control group caregivers, yet they reported greater satisfaction with the child's care and less physical strain on themselves. Treatment group caregivers were more likely than their control group counterparts to be in the labor force and less likely to say that caregiving caused them great financial strain. Treatment group caregivers also were more likely to be very satisfied with how they were spending their own lives. As expected, some treatment group caregivers (21 percent) were paid for caregiving during the follow-up period. The program's estimated impacts on some outcomes were especially large for these sample members.

These findings, coupled with earlier findings about the effects of the CDC program on children's service use and care quality, suggest that the program may be a desirable option to offer the parents of children receiving HCBS waiver benefits.