Consumer and Consultant Experiences in the New Jersey Personal Preference Program

U.S. Department of Health and Human Services

Consumer and Consultant Experiences in the New Jersey Personal Preference Program

Executive Summary

Leslie Foster, Barbara Phillips and Jennifer Schore

Mathematica Policy Research, Inc.

July 2005

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 this subject, you can 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, S.W. , Washington , D.C. 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.

Introduction

Consumer Direction of Medicaid Supportive Services. Roughly 1.4 million people with disabilities receive Medicaid-funded, noninstitutionalsupportive services each year. Home care agencies provide many of these services: under professional supervision, agency workers help beneficiaries with bathing, meal preparation, light housework, and other basic activities. "Consumer-directed care," in which Medicaid beneficiaries hire, train, supervise, and pay workers of their choice, is an alternative to the professional service model. Consumer direction increases beneficiaries' autonomy and control, but it also increases their responsibilities.

Cash and Counseling is a model of consumer-directed care that offers eligible Medicaid beneficiaries the opportunity to receive a monthly allowance to hire workers, including family members, and purchase other disability-related services and goods. Adult consumers can designate a representative, such as a family member or friend, to help them manage their care. Cash and Counseling also offers counseling and fiscal services to consumers and representatives. New Jersey, along with Arkansas and Florida, has tested the Cash and Counseling model as part of a three-state demonstration. MathematicaPolicy Research, Inc. is the demonstration evaluator.

In New Jersey, the demonstration was open to adult Medicaid beneficiaries who were: (1) using state plan personal care assistance (PCA) or had been assessed as eligible for it, (2) not also participating in home and community-based waiver programs or a state-funded consumer-directed program, and (3) expected to require PCA for at least six months. The evaluation randomly assigned demonstration enrollees to participate in New Jersey's Personal Preference program (the treatment group) or to use PCA as usual (the control group).

Goals of This Report. This report describes the implementation of Personal Preference by synthesizing information from in-person discussions with program staff, a mail survey of program consultants, telephone interviews with consumers in the treatment group, and program records. It discusses the program's goals and features, the ways consumers managed their program responsibilities and took advantage of increased flexibility, and the degree to which consumers were satisfied with the program. (Other reports from the evaluation estimate the program's impacts on consumers, their caregivers, and public costs; describe the types of beneficiaries and workers that chose to participate in the demonstrations; and explain demonstration implementation and program operations in greater detail.)

The Personal Preference Intervention. The Personal Preference allowance was based on the value of beneficiaries' Medicaid PCA plans. At enrollment, consumers were eligible for monthly allowances of $1,062, on average. To receive the allowance, consumers or their representatives had to develop a written cash management plan that met the approval of the Personal Preference program. Consultants helped consumers develop their plans and monitored consumers' well-being. They were also available to advise consumers about recruiting workers and accessing community services. The fiscal agent was available to write checks for goods and services purchased with the allowance and to process payroll taxes and employment forms for consumers who hired workers. The program did not charge consumers directly for consulting services, but consumers did pay for some of the fiscal services they used. (The program paid for others.)

Major Findings

Industry Support. Personal Preference garnered the cooperation of personal care agencies, which it relied upon to identify prospective demonstration enrollees and the hours of care planned for them before and during its demonstration. The industry viewed consumer direction as inevitable and even beneficial for some people with disabilities. Moreover, the program director responded to industry concerns by, for example, discouraging consumers from hiring workers away from agencies.

Outreach and Enrollment. New Jersey initially planned to recruit 2,000 beneficiaries into its demonstration in 12 months, but it actually recruited 1,755 beneficiaries in 32 months (November 1999 to July 2002). To boost enrollment midway through the demonstration, Personal Preference made two major changes to its approach to outreach and enrollment. It originally delegated outreach and enrollment activities to a private, for-profit firm with which the state had an existing Medicaid contract. The enrollment contractor was to invite eligible beneficiaries to join the demonstration when they were assessed or semiannually reassessed for PCA. When enrollment rates consistently fell short of expectations and costs consistently exceeded them, the program hired state employees to conduct outreach and enrollment activities. It also separated the timing of enrollment from that of assessment.

Enrollment did not increase much after these changes, but the changes demonstrate the pros and cons of alternative approaches. The key advantage of having an existing contractor conduct outreach and enrollment was expediency--it took less start-up time than beginning contract procurement anew or recruiting and hiring new state employees. The advantage of linking outreach with PCA assessments was that the care plans developed from beneficiaries' assessments provided an up-to-date basis for calculating the allowances consumers would receive under Personal Preference. Conversely, the key advantage of hiring state employees was that program staff had more control over outreach procedures and could experiment with them. As long as enrollment rates lagged, the key advantage of separating outreach from assessment was that it enlarged the pool of potential enrollees that outreach workers could pursue at any time.

Consumer Characteristics. Despite its difficulties, New Jersey eventually recruited a fairly diverse population for its demonstration. The evaluation randomly assigned 871 beneficiaries to the treatment group--404 nonelderly adults and 467 elderly ones. Slightly more than half of these consumers were White, and slightly more than one-third were Hispanic. About four in ten consumers had graduated from high school.

Planning for, and Using, the Allowance. Six months after being assigned to Personal Preference, slightly more than half of all consumers had received the program allowance, and nearly one-quarter were still enrolled but had not received it. (Three percent of consumers were deceased at this time, and the other fifth had disenrolled from the program.) Getting started on the allowance was subject to many procedural delays. The program eventually reduced three sources of delay by: (1) assigning consumers to consulting agencies instead of offering them a choice of agencies; (2) consolidating caseloads across a smaller number of agencies; and (3) cutting, from 30 to 14 days, the notice it gave to personal care agencies to discontinue services to beneficiaries assigned to Personal Preference. Still, because of the number of people involved in the development, review, and approval of cash management plans, getting started on the allowance took a long time. Consumers and representatives, consultants, program staff, and fiscal agent staff all played roles.

Consumers who received the Personal Preference allowance took advantage of the opportunity to use it flexibly. Among those who were receiving the allowance at the time of the nine-month follow-up interview, 80 percent said they used the allowance to hire one or more workers. Nearly 75 percent of these consumers hired family members, and about 40 percent hired friends or neighbors. Most workers helped consumers with household and community tasks, personal care, and routine health care, and many provided assistance with transportation.

According to program records, consumers used about 80 percent of their monthly allowance to pay workers. Roughly five in ten consumers received up to 10 percent of the allowance as cash for incidental purchases, of types specified in their cash management plans. Slightly fewer than one in ten consumers used the allowance to buy assistive equipment during the month observed for this analysis.

Recruiting Workers. Recruiting workers was difficult for some consumers. One-quarter of all consumers said they tried to hire but could not. Nearly 30 percent of those who did hire said it was difficult, often because of a lack of interested or qualified candidates. Some consultants said they were uncertain about how much recruiting assistance the program expected them to provide to consumers, especially those who did not have a family member they wished to hire.

Consulting and Fiscal Services. Consultants reported that their most time-consuming Personal Preference duties were helping consumers develop cash management plans, performing administrative tasks, and advising consumers about payroll-related activities. Consultants believed their services were of value to consumers, and most consumers confirmed that consultants provided useful help.

All allowance recipients used the program's fiscal services--availability of these services seemed to be an important part of consumers' successful management of their fiscal responsibilities. Moreover, the program relied on the fiscal agent to prevent misuse of the allowance by double-checking the accuracy of consumers' cash management plans and verifying that check requests matched those plans.

Consumer Satisfaction. Nine months after being assigned to the Personal Preference program, 91 percent of consumers said they would "recommend the program to others who wanted more control over their personal care services." Among consumers who received the allowance, 82 percent said it had improved their life greatly or somewhat. Consumers who used their allowance to pay workers were uniformly satisfied with how workers performed their tasks and with their relationships with workers. Elderly and nonelderly consumers were equally satisfied with most aspects of paid workers' reliability, promptness, and disposition.

Disenrollment. Despite high levels of satisfaction, 22 percent of consumers chose to leave the Personal Preference program within a year of enrolling. Although there was no single overriding reason for voluntary disenrollment, consumers most commonly said they disenrolledbecause they believed it was or would be difficult to assume the responsibilities of an employer (34 percent) or changed their minds and were satisfied with their usual PCA services (30 percent). In addition, some consultants reported that some consumers enrolled in the program without fully understanding consumer direction, then disenrolledafter they learned more about it. Nearly three-quarters of consumers who disenrolled or died did so without having received the program allowance.

Experiences of Different Types of Consumers. Multivariate models used to assess the experiences of different types of treatment group consumers suggested that, all else being equal, consumers who considered it very important, at baseline, to be able to pay family or friends for caregivingwere more likely than other consumers to receive the monthly allowance and stay in the program. Treatment group consumers who lived alone were less likely than others to receive the monthly allowance and stay in the program. Hispanic treatment group consumers were less likely than non-Hispanic ones to receive the allowance and stay in the program, and black consumers were less likely than white consumers to receive the allowance. Among consumers who hired or tried to hire workers, those who were elderly were less likely than those who were not to say hiring was difficult. Age was not otherwise associated with program experiences.

Policy Implications

Some policymakers have concerns about consumer direction of public funds. These include: (1) whether consumer direction should be available to all users of supportive services, (2) whether to allow family members to be paid for caregiving, (3) how to ensure consumer safety, (4) how to prevent the exploitation of workers, and (5) how to prevent the misuse of public funds. Personal Preference procedures addressed each of these concerns to some extent.

Assessing Suitability for Consumer Direction. New Jersey's policy was to not screen prospective enrollees on their suitability for consumer direction. Rather, the policy was to inform them of their responsibilities and rights under the program and let them decide whether to enroll and whether to select a representative. Consumers received PCA services as usual until they began receiving their program allowance, and they could disenrollfrom Personal Preference at any time and revert to usual services. Thus, Medicaid beneficiaries could try consumer direction without incurring great risk. A multivariate analysis suggested that New Jersey's decision to open the demonstration to all groups--including elderly adults, consumers with cognitive impairment, and those in need of large amounts of PCA--was sound.

Paying Family Members. While policymakers debate using public funds to pay family members, New Jersey allowed Personal Preference consumers to hire family members, including legally responsible spouses. The option to hire relatives probably was critical to the functioning of the program. Nearly three-quarters of consumers who hired workers hired family members (although only 2 percent hired a spouse). Although some consumers (27 percent) hired workers who were not family members, the proportion that did so successfully was considerably smaller than the proportion that tried.

Ensuring Consumer Safety. There was no evidence from consumers, consultants, or program staff that participation in Personal Preference led to any adverse effects on consumers' health and safety. Personal Preference monitored consumer safety and care quality primarily through consultants' contacts with consumers and representatives, which occurred by telephone and in consumers' homes. Moreover, while there was very little evidence or suspicion of consumer neglect or exploitation in Personal Preference, procedures existed for consultants and program staff to follow up if anything seemed amiss.

Preventing the Exploitation of Workers. Although Personal Preference workers had no formal mechanism to report grievances, worker abuse did not emerge as a serious problem in the program. More than half the consumers who used the allowance to pay workers, including family members, signed work agreements with them.Few Personal Preference consumers provided fringe benefits to their workers. Nearly all the workers were part-time, however, and part-time work rarely includes fringe benefits.

Preventing the Misuse of Public Funds. Misuse of the allowance was not a serious problem under Personal Preference, probably because the program took the potential for such a problem seriously. Appropriate use of the allowance was ensured primarily through program approval of the cash management plan and fiscal agent review to verify that expenditures were included in the plan.

Conclusion

The Cash and Counseling model proved administratively feasible and politically tenable in New Jersey during the evaluation period. Data from discussions with program staff, consultant questionnaires, and consumer surveys show that many consumers, who participated in Personal Preference voluntarily, ably managed their supportive services and found it rewarding to do so. In terms of retention and satisfaction, the program seemed equally attractive to elderly and nonelderly adults. New Jersey plans to continue offering Personal Preference as an option to eligible Medicaid beneficiaries.