The Experiences of Workers Hired Under Consumer Direction in Arkansas

U.S. Department of Health and Human Services

The Experiences of Workers Hired Under Consumer Direction in Arkansas

Executive Summary

Stacy Dale, Randall Brown, Barbara Phillips and Barbara Carlson

Mathematica Policy Research, Inc.

June 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.htm 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 (MPR) made this paper possible. Amy Zambrowski and Licia Gaber programmed the analysis and Valerie Cheh provided thoughtful comments on an earlier draft. Walt Brower edited the paper, and Cindy McClure produced it.

The paper has also benefited greatly from the thoughtful comments and suggestions of individuals outside MPR. In particular, we appreciate input from Kevin Mahoney, Pamela Doty, Maureen Michaels, and Lori Simon-Rusinowitz of the Cash and Counseling Demonstration and Evaluation management team; Sandra Barrett of the IndependentChoices program; Dawn Loughlin of the University of Maryland Center on Aging; and external reviewers Ted Benjamin, Rosalie Kane, and Robyn Stone.

We also thank the staff at the Centers for Medicare & Medicaid Services for their valuable support and input, and for helping to make the demonstration possible by obtaining the necessary waivers.

The opinions presented here are those of the authors and do not necessarily reflect the views 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 Cash and Counseling demonstration states, or the Centers for Medicare and Medicaid Services.

EXECUTIVE SUMMARY

An important consideration that is often overlooked in consumer-directed programs is the well-being of paid workers. Medicaid supportive services for individuals with disabilities have traditionally been provided through home care agencies. In contrast, under the Cash and Counseling model of consumer-directed care, beneficiaries hire and pay workers directly, deciding who provides their care, when they receive it, and how it is delivered. Because directly hired workers do not have an agency affiliation, some policymakers are concerned they may not have sufficient training, supervision, and support, and may not receive adequate wages. In addition, the emotional and physical well-being of directly hired workers may be at risk because of the workers’ lack of training and support; also, because these workers are usually the friends or relatives of their clients, they may find their jobs emotionally draining.

This study describes the experiences of workers hired under consumer direction, using results from the first Cash and Counseling demonstration, Arkansas’ IndependentChoices. This demonstration included Arkansans who were at least 18 years old and eligible for personal care services under the state Medicaid plan. After voluntarily enrolling in the demonstration (between December 1998 and April 2001), individuals were randomly assigned to direct their own personal assistance as IndependentChoices consumers (the treatment group) or to receive services as usual from agencies (the control group). IndependentChoices consumers could use a monthly allowance to hire their choice of caregivers, including friends or relatives (except spouses), or to buy other services or goods needed for health and personal care. At their follow-up interview, a sub-sample of consumers (including mainly those who responded to the survey after September 2000) were asked to identify their “primary paid worker.” Our analysis focuses on these primary paid workers.

Within about a month after being identified, primary paid workers were called to complete the Cash and Counseling Caregiver Survey. Those workers who were also the consumer’s primary informal caregiver at baseline (about 45% of the workers for the treatment group) were administered a longer survey instrument that also included questions related to their role as informal caregivers. From their survey responses, we constructed measures describing the worker’s characteristics and relationship with the consumer; the type, timing and amount of care provided during the past two weeks; perceptions of working conditions; whether the worker received training; and worker well-being, including wages, fringe-benefits, stress, and satisfaction. We focus primarily on describing the experiences of the “directly hired workers” for the treatment group; we use agency workers’ experiences as a benchmark.

Directly hired workers were generally the relatives or close friends of the consumer, often fulfilling the roles of both informal caregiver and employee. They provided many hours of unpaid care and care during non-business hours. Because they were not bound by agency rules or other state regulations, they were able to assist with a variety of health care tasks. Compared to agency workers, directly hired workers who were related to the consumer were more likely to feel emotional strain and were more likely to desire greater respect than they were receiving from the consumer’s family. In contrast, the well-being of non-related directly hired workers was very similar to that of agency workers. Thus, the greater strain for related workers appears to be due to other aspects of the relationship between these hired workers and the consumers, rather than to their being hired. The high proportion of directly hired workers (91%) who report getting along very well with the consumer is further evidence that being hired has not caused or exacerbated emotional or relationship problems for workers.

In general, the Cash and Counseling model does not appear to create adverse consequences for caregivers through either a lack of training or poor compensation. Directly hired workers were paid about the same wage on average as agency workers, but expressed substantially greater levels of satisfaction with their compensation. When differences in total hours of care provided were taken into account, caregivers hired by IndependentChoices caregivers were no more likely than agency workers to suffer physical injury or strain from caregiving, despite their being much less likely to receive training. Finally, both agency workers and directly hired workers were quite satisfied with their overall working conditions. Thus, workers hired under IndependentChoices appear to be as pleased with the program as consumers are.