Leslie Foster, Barbara Phillips and Jennifer Schore
Mathematica Policy Research, Inc.
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.
Roughly 1.4 million people with physical or developmental disabilities receive Medicaid-funded supportive services at home or in the community each year. Home care agencies provide many of these services: under professional supervision, agency workers help beneficiaries with bathing, preparing meals, light housework, and other basic activities. Consumer-directed care, wherein 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. Parents manage the allowance for consumers younger than 18, and 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. Florida, along with Arkansas and New Jersey, has tested the Cash and Counseling model as part of a three-state demonstration. Mathematica Policy Research, Inc. is the demonstration evaluator.
In Florida, the demonstration was open to children and adults with developmental disabilities, frail elderly adults, and adults with physical disabilities who were receiving Medicaid home and community-based services (HCBS) through the states Developmental Disabilities (DD) or Aged/Disabled Adult (ADA) waiver programs. The evaluation randomly assigned demonstration enrollees to participate in Floridas Consumer Directed Care (CDC) program (the treatment group) or to receive HCBS as usual (the control group).
Goals of the Report. This report describes the implementation of CDC 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 programs goals and features, the ways beneficiaries managed their program responsibilities and took advantage of increased flexibility, and the degree to which beneficiaries were satisfied with the program. (Other reports from the evaluation estimate the programs impacts on beneficiaries, their caregivers, and public costs; describe the types of beneficiaries and workers who chose to participate in the demonstrations; and explain demonstration implementation and program operations in greater detail.)
The CDC Intervention. The CDC program allowance was based on the value of consumers waiver care plans or claims histories. At enrollment, consumers were eligible for monthly allowances of $1,186, on average ($1,108 for children, $1,641 for nonelderly adults, and $818 for elderly adults). To receive the allowance, consumers or their representatives had to develop a written purchasing plan that met the approval of the CDC program. Consultants helped consumers develop their purchasing plans and monitored their well-being. They were also available to train consumers on program rules and employer responsibilities. 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 the fiscal services they used, up to a maximum of $25 a month.
Outreach and Enrollment. Florida began enrolling consumers in the demonstration and evaluation in June 2000. Initially, case managers from the ADA waiver program and support coordinators from the DD waiver program were responsible for outreach and enrollment activities. However, some did not support the concept of consumer direction--particularly for elderly adults--or were occupied with other responsibilities, and enrollment lagged far behind evaluation targets. About six months into the enrollment period, CDC hired 20 temporary state employees to work as enrollment specialists and build demonstration caseload. It also arranged to send a letter describing the demonstration from the governors office to eligible participants. The pace of enrollment then increased considerably, especially among children and nonelderly adults with developmental disabilities.
Florida enrolled 1,002 children in the demonstration and evaluation by August 2001 (15 months), 914 nonelderly adults by November 2001 (18 months), and 904 elderly adults by July 2002 (26 months). The evaluation randomly assigned 501 children, 456 nonelderly adults, and 453 elderly adults to the treatment group. All children in the treatment group, 90 percent of nonelderly adults, and 2 percent of elderly adults joined the demonstration through the DD waiver. Ninety-eight percent of elderly adults and the remaining 10 percent of nonelderly adults joined through the ADA waiver.
Consumer Characteristics. Despite differences in age and disability, consumers who enrolled in the demonstration had some characteristics in common. Most were White, and either they or their representative were high school graduates. Nearly all consumers were receiving help with household and community activities and personal care when they enrolled in the demonstration, but many said they needed more help. A larger proportion of nonelderly than elderly consumers had representatives (84 versus 70 percent), which reflects the prevalence of developmental disabilities in the younger group.
Planning for, and Using, the Allowance. It took many consumers a long time to develop purchasing plans and begin receiving their monthly allowance, if they did so at all. Twelve months after being assigned to CDC, only 57 percent of all consumers had received the allowance--71 percent of children, 58 percent of nonelderly adults, and only 41 percent of elderly adults. Allowance delays stemmed from consumers individual circumstances (such as illness or not having family or friends to hire), staff workloads and procedural delays (such as the purchasing plan review and approval process), and an initial uncertainty about whether consumers were suitable for CDC if they could not develop a purchasing plan mostly independently. The program eventually began offering consumers more help with their purchasing plans if they had not started on the allowance within 90 days of enrollment.
Consumers who received the allowance used it to meet a variety of care-related needs. Among consumers receiving the allowance around the time of a nine-month follow-up survey, 78 percent (82 percent of children, 71 percent of nonelderly adults, and 81 percent of elderly adults) said they used it to hire one or more workers. Nearly 60 percent of these consumers hired family members, but the proportion was smaller for children (52 percent) than for elderly adults (64 percent). Most workers helped consumers with household and community activities and personal care, and many provided assistance with routine health care and transportation. According to program records, consumers used at least half their monthly allowance to pay workers. Four in ten consumers opted to receive some of the allowance (up to 20 percent) as cash for incidental purchases identified in the purchasing plan. Some also used the allowance to buy personal care supplies (16 percent) or community services (15 percent).
Hiring workers was difficult for some consumers. Nineteen percent of all consumers (15 percent of children and approximately 21 percent of nonelderly and elderly adults) tried to hire but were not able to. Two-fifths of those who did hire said it was difficult, often because of a lack of interested or qualified candidates. Parents who hired for minor children were more likely than adult consumers to report difficulty (46 percent versus roughly 37 percent).
Consulting and Fiscal Services. Consultants reported that they spent most of their time helping consumers develop purchasing plans, performing administrative tasks, and encouraging or listening to consumers. Most consultants believed their services were of value to consumers. Likewise, most consumers said they received useful help from their consultants. According to program staff and consultants who took part in site visit discussions, however, consultants initial reluctance to provide hands-on assistance while consumers were developing their purchasing plans might have led some consumers to drop out of the program without completing a plan or receiving the program allowance.
Nearly all allowance recipients used the programs fiscal services; the availability of these services undoubtedly contributed to consumers success in the program. The fiscal agents performance of some of its CDC responsibilities was hampered, however, by slow cash flow, higher-than-expected costs, and inadequate reimbursement from the program. For example, about 18 months elapsed before the fiscal agent was able to produce timely, easily understood financial statements, which consumers and consultants needed to monitor spending.
Consumer Satisfaction. Nine months after being assigned to CDC, 88 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, roughly 60 percent said the allowance had greatly improved their life, and another quarter said it improved life somewhat. Satisfaction with the program was fairly uniform across age groups. In addition, 56 percent of childrens parents, 67 percent of nonelderly adults, and 50 percent of elderly adults were very satisfied with their overall care arrangements nine months after enrollment. Among consumers who hired workers with the CDC allowance, 25 percent of childrens parents, 29 percent of nonelderly adults, and 37 percent of elderly adults reported unmet needs for personal care. Thirty-two percent of all consumers said program rules kept them from purchasing things that would have enhanced their independence or that of their child. Parents of minor children were most likely to report this constraint (38 percent).
Disenrollment. As in the other demonstration states, about one-quarter of consumers chose to leave the CDC program within a year of enrolling. Elderly consumers were most likely to disenroll (38 percent), and children were least likely (16 percent). Consumers most commonly said they disenrolled because they changed their minds or were satisfied with their usual waiver services. Elderly adults were more likely than younger consumers to say they disenrolled because they had problems with their responsibilities as employers or with fiscal tasks.
Experiences of Different Types of Consumers. Multivariate models used to assess the experiences of different types of consumers suggested that, all else being equal, consumers eligible for fairly generous allowances and those who enrolled during the first 12 months of demonstration intake--presumably the most eager and self-motivated consumers--were more likely than others to receive the allowance and remain in the program for their follow-up year. Consumers who were interested in paying family and friends for caregiving, those who had informal caregivers, and those with prior hiring experience or a representative with such experience also were especially likely to fare well in CDC.
Of the Cash and Counseling demonstration states, only Florida targeted the demonstration to people with primarily developmental disabilities, and only Florida enrolled children. Moreover, whereas Arkansas and New Jersey based the consumer-directed allowance only on Medicaid state plan personal care services, Florida based it on a wide range of Medicaid HCBS benefits, including professional therapies. Our analysis of data from discussions with program staff, consultant questionnaires, and consumer surveys shows that Floridas CDC program is worthwhile from a consumer perspective and feasible from an administrative one. In terms of enrollment, retention, and satisfaction, the program was most attractive to the families of children with developmental disabilities and least attractive to frail elderly adults.
Consumer direction of public funds raises concerns among policymakers, however. These concerns include: (1) whether all Medicaid beneficiaries should be able to direct their own supportive services if they want to; (2) whether it is appropriate for consumers to pay family members for caregiving; (3) how to ensure the quality of consumer-directed services; (4) how to ensure that workers are trained and fairly treated; and (5) how to avoid fraudulent use of the allowance. CDC procedures addressed each of these concerns to at least some extent.
Assessing Suitability for Consumer Direction. Floridas policy was to not screen prospective enrollees for their suitability for consumer direction, but rather to inform them of their responsibilities and rights under the program and let them decide whether to enroll and whether to select a representative. In practice, however, some case managers appear to have discouraged the enrollment of elderly adults. Likewise, some consultants were reluctant to help consumers develop their purchasing plans, believing that consumers needing extensive help were not fit for the program. Florida addressed these issues by hiring temporary state employees to conduct outreach and enrollment activities, and by instructing consultants to give consumers more assistance in developing their purchasing plans if they needed it. It also allowed consumers to receive HCBS as usual until the CDC allowance started and to disenroll from the program and revert to traditional HCBS on the first day of the following month. Thus, Florida made procedural adjustments and learned about consumers suitability for consumer direction without undue risk to the consumers.
Paying Family Members. While policymakers debate the use of public funds to pay family members for caregiving, Florida allowed CDC consumers to hire family members, including (legally responsible) spouses and parents of minors. The option to hire relatives probably was critical to the programs success. Nearly 60 percent of all consumers who hired workers hired family members. Although 38 percent of consumers who hired workers hired at least one person unrelated to them, the proportion that successfully hired nonrelatives was considerably smaller than the proportion that tried to do so.
Exploitation of Workers. Although CDC had no formal mechanism for workers to report grievances, worker abuse does not seem to have been a serious problem in the program. Furthermore, although few CDC consumers provided fringe benefits to their workers, nearly all workers were paid on a part-time basis, and fringe benefits are rare in most part-time jobs.
Ensuring Consumer Safety. Data for this analysis yielded no evidence that participation in CDC led to adverse effects on consumers health and safety. CDC monitored consumer safety and care quality primarily through consultants contacts with consumers and representatives, which occurred through telephone calls and home visits. Moreover, while there was very little evidence of consumer neglect or exploitation in CDC, program staff developed formal arrangements for consultants to refer suspicious cases to protective-services agencies.
Preventing Fraud. The CDC program developed several policies to prevent misuse of the allowance: (1) consultants were to review monthly financial statements with the consumer or representative each month; (2) consumers were to retain receipts for incidental purchases made with cash; and (3) the fiscal agent was to pay only for purchases listed in consumers purchasing plans. It took time to implement these policies, especially the provision concerning financial statements. Any misuse of the allowance seemed to result from honest error on the part of consumers.
Despite challenges Florida faced in implementing the CDC program, many consumers successfully arranged supportive services that met their individual needs and enhanced their sense of self-sufficiency. Program staff adhered to the tenets of the relatively expansive Cash and Counseling model of service delivery and made operational adjustments in areas where practice fell short of policy. Florida continues to offer the CDC program as an option to eligible HCBS recipients. In summer 2002 the state legislature passed the Florida Consumer-Directed Care Act, which directed several state agencies to develop and seek Medicaid waivers for consumer-directed programs like CDC.