U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services
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. Additional funding was provided by the Robert Wood Johnson Foundation. For additional information, 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: pdoty@osaspe.dhhs.gov.
This paper describes the experiences of 194 early clients in the Arkansas Cash and Counseling Demonstration, IndependentChoices. The description is based on the clients’ responses to a telephone survey conducted about nine months after they applied to enter the program and were randomly assigned to the demonstration’s treatment group to receive a monthly cash allowance. Mathematica Policy Research, Inc. (MPR), the demonstration evaluator, administered the survey.
After briefly describing the Arkansas project, data and methods used, and client characteristics, this paper discusses client outcomes in four areas: (1) program participation; (2) uses of services, goods, and cash; (3) hiring of caregivers and revision of cash expenditure plans; and (4) satisfaction. Particularly interesting results include the following:
On average, recipients of the experimental cash benefit were elderly (73 percent were aged 65 or older), in poor health, and had high levels of functional disability. This finding contradicts the conventional wisdom that the option to purchase one’s own services out of an allowance in lieu of receiving professionally managed personal attendant services appeals primarily to younger adults with physical disabilities or to the elderly with less severe disabilities.
Two-thirds of the cash benefit recipients were still participating in IndependentChoices after nine months. Nine percent had died prior to the nine-month interview and 24 percent had disenrolled.
Disenrollments occurred for a variety of reasons, including factors that made some individuals ineligible to continue (e.g., loss of financial eligibility for Medicaid, moving out of state, entry into a nursing facility). Fifty-nine percent reflected a decision to return to the traditional system of receiving personal care services through agencies.
Choosing to return to traditional services was more likely to occur during the first four months of participation; indeed, most such choices occurred after random assignment to the treatment group but before the participant began receiving the allowance.
Very few participants elected to receive the full amount of their monthly cash allowance in “cash.” Nearly all those who employed individual attendants preferred to have the fiscal intermediary/counseling agency act as their payroll agent and file the employer’s share of applicable taxes. Described to participants as a “book-keeping” service, this option was offered to participants at no extra charge. Most participants chose to have the service maintain an account for them and make major purchases, in addition to paying workers, on their behalf.
Most participants (92 percent) had at least one paid caregiver. Eighty-six percent of participants who received the cash allowance (that is, excluding those who died or disenrolled before actually receiving the allowance) used some or all of the allowance to hire caregivers.
Over 90 percent of participants hired paid caregivers who were family members, friends, or neighbors. Only a handful of participants hired individuals previously unknown to them.
Most participants had live-in help (paid or unpaid) and most also had both paid and unpaid caregivers. However, substantial minorities of participants lived alone (over one-third) or did not have any unpaid helpers (one-quarter).
Prior to spending their cash allowances, participants were required to develop cash expenditure plans. Actual spending was required to follow the plan, in order to avoid possible overspending or unauthorized purchases; however, participants could revise their plans at any time as long as they did not go over-budget. Forty percent of participants who accessed the allowance revised their cash expenditure plans at least once prior to the nine-month interview.
Eighty-two percent of participants who received the cash allowance reported that it improved their quality of life. None said that they were worse off.
Roughly half those reporting an improved quality of life cited reasons having to do with caregivers (e.g., being able to hire individuals of their choice, having better access to the right kind of personal assistance services, or more conveniently scheduled services, and being able to relieve family members). Almost half cited the flexibility to use the allowance to purchase other kinds of goods and services (e.g., medications, medical and personal care supplies, equipment, home modifications).
Participants were allowed to “save up” from month to month in order to accumulate enough funds to purchase a major piece of equipment or home modification. Relatively few clients (10 percent) used the allowance to purchase or repair equipment for personal activities other than meal preparation or housekeeping. Similarly, only 10 percent of participants used the allowance to make a home modification and only 2 percent used the allowance to make a vehicle modification.
All respondents expressed satisfaction with their relationships with paid caregivers who had helped them recently.
More than 9 out of 10 participants (including those who disenrolled and family members responding on behalf of those who died) would recommend IndependentChoices to others seeking greater control over their personal care services.
| The Full Report is also available from the DALTCP website (http://aspe.hhs.gov/daltcp/home.htm) or directly at http://aspe.hhs.gov/daltcp/reports/earlyAR.htm to go directly to it. |