Consumer and Counselor Experiences in the Arkansas IndependentChoices Program. DISCUSSION


The Arkansas IndependentChoices program is one of three Cash and Counseling demonstration programs testing a model of consumer direction that provides a monthly allowance to consumers (or their representatives) to purchase personal assistance and related goods and services, and provides the support of counselors and bookkeepers to assist in managing the allowance. Consumers included in its evaluation were highly satisfied with the program and care arrangements developed with the allowance. Program staff were pleased that the program appeared to increase the availability of personal assistance for consumers affected by the state's chronic worker shortage and for the minority of consumers who were dissatisfied with agency-provided assistance. Nevertheless, the program may not have been suitable for everyone. Roughly only a tenth of eligible beneficiaries came forward for the program and among those randomly assigned to receive the allowance, consumers who did not have a relative or acquaintance to hire as a worker, tended to have difficulty hiring and were more likely to disenroll from the program.

Specific Implementation Lessons from IndependentChoices

IndependentChoices is only one of three Cash and Counseling demonstrations, so it would be premature to draw conclusions about what a consumer-directed PAS benefit should look like based on its implementation alone. Nevertheless, IndependentChoices does offer some specific lessons for consumer-directed PAS programs.

Outreach and Enrollment. Staff found direct mailings to PAS users (such as letters signed by the governor) to be the most efficient means of disseminating information about the program. Broader types of outreach, such as public service announcements, led to many calls from individuals not eligible for Medicaid PAS and took a great deal of staff time. Enrollment required more resources than originally anticipated. Staff streamlined some procedures around these activities (for example, by making sure all family members who were involved in care decisions were present at introductory home visits with consumers). Staff also made sure that outreach and other program materials were written at an appropriate reading level and that consumers also had many chances for verbal communication since written materials alone were seldom adequate for explaining the complexities of the program. (Over half of consumers had eight or fewer years of formal education (Appendix Table A.1).)

Counselors, Bookkeepers, and Representatives. The combined efforts of counselors, bookkeepers, and representatives enabled consumers with different types of disabilities to participate successfully in consumer direction. Several lessons emerge about the structure of the organizations that employ counselors and bookkeepers and about the services they provide. IndependentChoices originally awarded contracts to three organizations, each of which provided both counseling and bookkeeping services. It proved important that IndependentChoices contracted with more than one organization, because when one of them withdrew early in the demonstration, another was able to fill the void quickly.

Realizing that counselors and bookkeepers would need to communicate frequently with each other, IndependentChoices required that each organization provide both counseling and bookkeeping services. Few organizations had the needed staff to provide both types of services, however, and those that did were somewhat stronger in counseling activities. Although the organizations could conduct major bookkeeping tasks well--processing timesheets efficiently and paying workers promptly--bookkeeping staff were relatively inexperienced in some of the details of their fiscal responsibilities (for example, those pertaining to payroll taxes) and required technical assistance, including from an independent auditor hired by the National Program Office.

Ensuring consumer well-being and avoiding misuse of the monthly allowance are key concerns for consumer-directed models. In response, IndependentChoices initially may have overestimated the need to monitor consumers, having counselors contact them monthly by telephone and quarterly in person. In-person visits were later reduced to every six months, as it became clear that few consumers required a regular quarterly visit. On the other hand, a small number of consumers needed frequent visits to resolve specific problems or to ensure their well-being or appropriate use of the allowance.

Representatives were key to many consumers' success with IndependentChoices. Forty-one percent named representatives at enrollment to help them manage the monthly budget or to manage it for them, although elderly consumers were much more likely than younger ones to do so. Counselors believed representatives largely acted according to consumer wishes and in their best interest.

Use of the Monthly Allowance. IndependentChoices provided a relatively flexible benefit that could be used to hire a personal care worker, including family members or friends. Consumers who could not hire family or friends had difficulty identifying workers, leading some to disenroll. In fact, some counselors thought the program may have been unsuitable for consumers who could not hire workers on their own. A formal worker registry, additional training about how to canvas a widening circle of acquaintances to identify potential workers, or the opportunity to hire spouses might have alleviated the burden of hiring for some. In addition, introductory program materials could highlight the complexities of hiring a worker so that consumers and their families took that into consideration when deciding whether to go forward with consumer direction.

Although consumers used most of the monthly allowance to pay worker salaries, counselors and consumers noted the importance of being able to use the allowance to purchase care-related goods and services such as personal care supplies, medications, and community services, including transportation. Some consumers, primarily nonelderly ones, used the allowance to pay for home modifications and purchase assistive equipment.

How IndependentChoices Addressed Policy Concerns about Consumer Direction

Consumer-directed personal assistance in a publicly funded program like Medicaid raises many concerns among policymakers, as discussed at the start of this report. These concerns include (1) whether consumer direction should be available to all PAS users, (2) whether to allow family members who might otherwise help without pay to be hired as workers, (3) how to ensure care quality for consumers, (4) how to ensure workers are trained adequately and treated fairly, and (5) how to avoid fraudulent use of a cash benefit. We conclude by discussing how the structure of IndependentChoices and its procedures addressed each of these concerns to a greater or lesser degree.

Appropriateness Screening Did Not Appear to Have Been Necessary for IndependentChoices, Although Use of Representatives Was Common

IndependentChoices did not screen beneficiaries for their appropriateness to participate in a consumer-directed program. Any beneficiary eligible for the Arkansas Medicaid PAS benefit could apply, including those with cognitive deficits or behavioral problems, such as substance abuse or serious mental illness. The program was also open to eligible adults of any age despite some policymaker skepticism that consumer direction would be of interest to or appropriate for elders. Screening was avoided to be consistent with the philosophy of consumer direction and out of concern that beneficiaries deemed inappropriate might bring legal challenges. Program staff believed that individuals would self-select for the program once they understood the responsibilities and risks involved. Moreover, consumers could identify representatives at enrollment (almost always family or friends) to help them manage the benefit or to manage it on their behalf. Use of representatives or surrogate decision makers is common in public consumer-directed programs (Tilly and Wiener 2001; and Flanagan 2001). A notable exception is the California In-Home Supportive Services program, which excludes consumers with cognitive impairments (Doty et al. 1999). IndependentChoices counselors encouraged consumers who had not initially chosen representatives to select one if the consumer was having difficulty developing the spending plan or recruiting workers. The program also reserved the right to terminate a consumer from IndependentChoices and return him or her to the traditional PAS benefit if the program seemed unsuitable. That IndependentChoices terminated only 3 of the 1,004 of the mostly elderly consumers who enrolled and that reports of abuse of consumers or of the allowance were negligible (as discussed further below) supports the idea that appropriateness screening was not necessary for this program.

Allowing Consumers to Hire Relatives Was Critical to the Success of the Program, Although Consumers Could Not Hire Their Spouses

There is a long-standing debate in the history of community-based long-term care about whether it is appropriate to use public funds to pay family members and others who would provide all or some care without pay (Benjamin and Matthias 2001; Benjamin et al. 2000; Tilly et al. 2000; Doty et al. 1999; Simon-Rusinowitz et al. 1998). Those who consider it appropriate point to unpaid caregiver burnout and their foregone wages, while those who consider it inappropriate point to increased costs and loss of traditional familial caregiving values. Current federal law allows relatives who are not legally liable to be paid as caregivers. (Legally liable relatives include spouses and parents of dependent children.) In 1999, more than 80 percent of the 139 publicly funded consumer-directed personal assistance programs in the United States allowed consumers to hire nonlegally liable relatives (Flanagan 2001).

Even though demonstration waivers permitted hiring spouses, IndependentChoices allowed consumers to hire any relatives except spouses as personal assistance workers. IndependentChoices designers decided not to allow consumers to hire spouses partly because it seemed too politically sensitive for Arkansas at the time. In addition, the design decision was made before demonstration waiver terms and conditions were finalized, and the designers feared allowing consumers to hire legally liable relatives might be an obstacle to waiver approval. Outreach staff, however, reported that some beneficiaries did not apply to the program because they could not hire their spouses with the allowance. IndependentChoices also appeared to have lost some support from disability advocates due to this restriction. Although consumers could not hire their spouses, more than three-quarters did hire other family members. Family and friends represented a labor pool unavailable to agencies, many of which experienced severe worker shortages during the demonstration. Moreover, consumers who did not hire relatives or acquaintances were more likely to report having a difficulty hiring a worker. (See Foster et al. 2003a for an analysis of IndependentChoices effects on informal caregivers and Dale et al. 2003b for a discussion of the substitution of paid for informal care.)

Regular Counselor Monitoring and Follow up Identified and Resolved Potential Consumer Safety and Care Quality Issues

Ensuring the health and safety of vulnerable consumers and the quality of their personal assistance without agency oversight is a major concern for consumer direction. For many years, regulations for agency-delivered home care have been in place to try to ensure care quality through requirements concerning agency structure and worker training and supervision (Kapp 2000; and Doty et al. 1996). However, researchers and policy makers disagree about the fundamental definition of care quality in consumer-directed models and how to assess it. Should the uniform professional standards of agency-based care apply? Or are the consumer's opinions of how well care is provided more germane and appropriate to the nontechnical nature of personal assistance (Benjamin 2001)? In 1999, most U.S. consumer-directed personal assistance programs (74 percent) required that workers have specific qualifications; nearly half (45 percent) required some type of worker training; and most (88 percent) conducted quality monitoring activities such as case management, consumer satisfaction reviews, and program evaluations (Flanagan 2001).

There was no evidence from consumers, counselors, or state program staff that participation in IndependentChoices led to any adverse effects on consumers' health and safety. (This is consistent with the evaluation of the California In-Home Supportive Services program, which also found that consumer direction had no deleterious effect on care quality or consumer safety (Doty et al. 1999).) IndependentChoices oversaw consumer safety and care quality primarily through regular counselor contacts with consumers by telephone and in person. Subtle behavior changes or other cues in telephone contact sometimes prompted a home visit by a counselor, occasionally unannounced. As noted, reports of consumer abuse were rare, and consumers were overwhelmingly satisfied with the program and their care arrangements. A companion analysis found IndependentChoices had no deleterious effect on objective, care-related outcomes for consumers. Relative to the randomly assigned control group, consumers in IndependentChoices had no more falls, decubiti, or injuries incurred while receiving paid care, and, for some of these outcomes, they had fewer such problems (Foster et al. 2003b).

Although Few Workers Were Offered Fringe Benefits, Reports of Worker Abuse Were Rare in IndependentChoices

Critics of consumer direction are also concerned about the welfare of workers in the absence of collective bargaining and agency protection from abusive caregiving situations. Reports by IndependentChoices counselors of worker abuse were rare. (The program did not, however, have formal procedures to receive and address worker complaints against consumers or their representatives, so if workers did have complaints, they may have gone unreported.) More than two-thirds of workers were given written contracts or agreements to sign delineating their responsibilities. Few were offered fringe benefits other than free room or food, and health insurance was never offered. The paucity of fringe benefits was likely a result of the low level of the monthly allowance, the fact that most workers were family members, and the fact that fringe benefits are rare in any low-paying part-time job.

A companion report (Dale et al. 2003a) compared responses to interviews with workers hired with the IndependentChoices allowance to responses given by workers for control group members. It found workers hired with the allowance, relative to those for the control group: received roughly equivalent wages (although they were much less likely to receive fringe benefits), were no more likely to suffer physical injury from caregiving (despite receiving less formal training), and were equally satisfied with working conditions.

Counseling and Bookkeeping Procedures Helped Make Abuse of the Allowance Rare

Providing a "cash benefit" instead of services in a public program always raises concerns about fraudulent use of the benefit. Roughly half of consumer-directed programs in 1999 addressed concerns about benefit fraud by directly paying worker salaries (Velgouse and Dize 2000; and Simon-Rusinowitz et al. 2000). IndependentChoices prevented abuse by ensuring that each spending plan contained only permissible goods and services and by comparing each timesheet and consumer check request with the spending plan (except for the few consumers who did not use the bookkeeping service). Counselors also reviewed the receipts consumers were required to keep for purchases other than those made with the relatively small cash disbursement consumers could take from the allowance for incidental expenses. Only a third took advantage of the opportunity to receive even part of the allowance in cash (up to 10 percent of the allowance or about $32 per month, on average). Moreover, although consumers could receive the monthly allowance directly, almost all chose to use the program's bookkeeping service to pay workers and other service providers. There was no evidence that consumers or their representatives materially misused the allowance.

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