As long-term service expenditures have risen, policymakers have sought ways to control costs while maintaining consumer satisfaction. Concurrently, there is increasing interest in the disability community in consumer direction. The Cash and Counseling Demonstration and Evaluation (CCDE) seeks to increase consumer direction and control costs by offering a cash allowance and information services to persons with disabilities, enabling them to purchase needed assistance. Because the disability community is composed of diverse subgroups, needs of these consumer communities must be assessed individually. Results from a telephone survey conducted to assess the interest in a cash option for Florida adults with developmental disabilities is presented, the three-state CCDE described, how survey findings can inform consumer information efforts discussed, and policy issues highlighted.
As long-term service expenditures have risen, policymakers have sought new ways to control costs while maintaining or increasing consumer satisfaction. Concurrently, there is increasing interest among the disability and aging communities in consumer-directed services (Ansello & Eustis, 1992; Kapp, 1999, 1996; Mahoney, Estes, & Heumann, 1986; Simon-Rusinowitz & Hofland, 1993), which is exemplified in the language of the 1994 Health Security Act (Kapp, 1996). One such model, the Cash and Counseling Demonstration and Evaluation (CCDE), offers a cash allowance and information services to persons with disabilities, enabling them to purchase the services, assistive devices, or home modifications that best meet their needs. In principle, cash allowances maximize consumer choice and promote efficiency because consumers who shop for the most cost-effective providers may be able to purchase additional and more personalized services (Kapp, 1996). To determine whether this is true, researchers are evaluating the CCDE model via a three-state demonstration project: the CCDE is co-sponsored by the Robert Wood Johnson Foundation (RWJF) and the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. In this article we describe the assessment of preliminary interest in the cash option.
In this discussion we present findings from a telephone survey conducted to assess consumers' preliminary interest in the cash option versus traditional services in Florida, one demonstration state. Florida's demonstration (called Consumer-Directed Care) encompasses several consumer populations; here we focus on adults with developmental disabilities. Because this preference survey has provided background information for the CCDE, we begin with a description of the three-state demonstration and evaluation to provide a context for the purpose and utilization of the Florida survey findings. Although the survey results have guided several aspects of program development, our discussion is focused on one application: guidance in developing materials to assist Florida's efforts to inform consumers about the CCDE. We also highlight key policy issues addressed by the survey.
Personal assistance services encompass a range of human and technological assistance provided to persons with disabilities who need help with activities of daily living, including bathing, dressing, toileting, transferring, and eating, and/or instrumental activities of daily living, such as housekeeping, cooking, shopping, and laundry as well as managing money and medication. Public or private third-party payers can use any of three personal assistance services financing methods: cash benefits (payments to qualified clients or their representative payees), vendor payments (a case-manager determines the types/amounts of covered services and arranges for and pays authorized personal assistance services providers to deliver these services), and vouchers (clients use funds for authorized purchases). The CCDE's goal is to evaluate the impact of cash benefits.
In the United States, most existing public programs that finance personal assistance services—including such major funders as Medicaid's optional personal care services benefit, and home and community-based long-term service (HCBS) Waiver programs—follow a vendor payment model. That is, the program purchases services for consumers from authorized vendors (i.e., service providers or equipment suppliers). In some programs, the list of covered services and authorized vendors is quite restricted. Other programs may have a broader range of covered services, including adult day care, transportation, home modifications, and assistive devices. Clients may sometimes hire independent providers (i.e., workers not employed by home health agencies) to be their in-home aides.
Until recently, the prohibition on direct payments to Medicaid clients had rarely been questioned. However, many state program officials have come to share the concerns of disability rights advocates who want personal assistance services programs that promote consumer choice and avoid program rules that may foster dependency in the name of consumer protection and/or public accountability (Litvak, Zukas, & Heumann, 1987; Litvak & Kennedy, 1990, 1991). Great changes have occurred in the field of developmental disabilities since the 1970s, namely, the movement from a system in which most individuals with developmental disabilities were institutionalized to community-programs and services (Bradley, Ashbaugh, & Blaney, 1994). However, there is a growing recognition for the need to move beyond a system that is still organized around programs and professionally driven to one that is truly a part of the community and is consumer and family-driven (Nisbet, 1992). As in the general disability field, the motivation for these changes comes from a desire to improve the quality of supports available to and the lives achieved by individuals with disabilities, the philosophical belief in the consumers' right to direct their own lives and growing funding constraints (Ashbaugh et al., 1994).
In addition, state officials have a strong interest in achieving program economies. Most Medicaid personal assistance services programs mandate that case managers (registered nurses and/or social workers) assess clients, develop and monitor care plans, and authorize provider payments. Case-management can be expensive, and researchers and administrators question whether it should be uniformly required (Jackson, 1994; Geron & Chassler, 1994). As in the general disability field, there is growing interest in the developmental disabilities field in alternatives to the current vendor payment mechanisms, including support vouchers and cash paid directly to consumers (or their families) to determine what specific supports they need and wish to purchase (Bradley et al., 1994; Hayden & Abery, 1994). Hence, reasons for the growing interest in a cash option are both savings on program administration and enhanced consumer empowerment.
Of particular concern are the growing numbers of individuals on service waiting lists, with a 1994 report citing approximately 200,000 individuals with developmental disabilities waiting for services (Hayden & DePaepe, 1994). In Florida, the governor and legislature have recently made a commitment to serve those consumers with developmental disabilities who have been waiting to receive services. Since July 1, 1999, the Florida Department of Children and Families has received $300 million in additional funding for Medicaid Waiver services to serve 23,000 consumers on waiting lists at that time (Personal communication, K. Schoolfield, Florida Department of Children and Families, Developmental Services Program, December 12, 2000).
Cash allowance programs are currently very small because they involve “state-only” funds. States cannot use Medicaid to fund cash allowances that permit clients to purchase their own services because of federal restrictions on direct payments to clients. Consequently, up until the advent of CCDE, it was not possible to evaluate large programs with a cash option.
Little research exists to indicate (a) how many consumers (or surrogate decision-makers) would choose a cash option, (b) what consumer characteristics might indicate who would choose cash versus agency-based personal assistance services, and (c) what cash option features were attractive/unattractive to consumers and surrogates. This information is essential to help the demonstration states design various cash option components (including counseling services) and approaches that would enable consumers and surrogates to make an informed choice between the cash option and their current program. As indicated by presurvey focus groups, the cash option is quite distinct from traditional services. and consumers often have difficulty understanding such a new and different concept (Zacharias, 1997a, 1997b). For consumers who have not completed or gone beyond high school, this communication effort is especially challenging. In addition, even those consumers who decide they like the cash option and feel qualified to try it need to overcome fears and concerns about changing a service that is so important to their daily lives.
Review of the literature indicates a growing number of attempts to implement cash (and voucher) payment systems for services and supports for individuals with developmental disabilities. Family support cash subsidy programs have been initiated in a number of states over the past decade (Herman, 1991; Knoll et al., 1990; Meyers & Marcenco, 1986; Wisconsin Department, 1985). Efforts are now being undertaken to develop, implement, and field-test systems through which residential and day activity Medicaid funding is directly controlled by individuals with developmental disabilities (with the support of their families, when appropriate and desired by the individual) (Cotten & Sowers, 1996; Fenton et al., 1997). A major systems change effort, also funded by the Robert Wood Johnson Foundation, is being implemented in about half of the states (Moseley, 1999). Through the Self-Determination for Persons With Developmental Disabilities Project, many of the participating states are developing and field-testing mechanisms through which consumers will directly control support funding, without receiving a cash allowance per se.
Most consumers with developmental disabilities and their families are just beginning to be introduced to the new concepts and approaches. To date, there have been no attempts to systematically determine the extent to which individuals with developmental disabilities and their families desire to control funding, the mechanisms through which they would prefer to do so, the extent to which individuals with different characteristics (i.e., age, gender, ethnicity) prefer to control their funding, and the reasons for their desire to do so. Some literature regarding older consumers provides guidance regarding background characteristics possibly related to preferences for consumer direction. Glickman, Brandt, and Caro (1994) found an association between client willingness to assume responsibility for directing a home care worker and the following client characteristics: prior experience directing an in-home worker, greater length of time receiving home care services, greater involvement in directing a home care worker, and lower levels of satisfaction with their home care services.
Research indicating differences in long-term service use and caregiving patterns among some minority groups—greater informal care and less nursing home use among some minority groups compared to their white counterparts—offers reason to speculate that preferences for consumer-direction may differ among racial and ethnic groups (Rimer, 1998; Tennestedt & Chang, 1998; Wallace, Levy-Storms, Kington, & Anderson, 1998). More recently, Sciegaj and Kyriacou (2000) found that consumers' preferences for types of personal assistance services (consumer-directed, negotiated care-managed, and traditional case-managed services) varied among racial/ethnic groups. Literature addressing self-determination for consumers with developmental disabilities stresses the importance of teaching consumers skills needed to be self-directing, suggesting that it would be important to assess these consumers' preferences regarding training to learn the skills required of cash option consumers (Abery, 1994; Wolfe, Ofiesh, & Boone, 1996).
However, limited information about consumers' preferences for consumer direction, and specifically the cash option, point to the need to further understand many unanswered questions. Most important, what types of consumers (specifically those with developmental disabilities) and surrogates, and how many, would choose the cash option given the opportunity? In addition, what would their reasons be for this choice?
Design and Procedures
As the national program office for this large project, the University of Maryland Center on Aging directs and coordinates the demonstration, oversees the evaluation, and provides technical assistance to the demonstration states. The national program office works in conjunction with the project Management Team comprised of Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation project officers, the evaluation team leader from Mathematica Policy Research, Inc., and advisors from the National Council on the Aging, the Health Care Financing Administration (HCFA), and the Social Security Administration.
In the winter of 1996/1997, Arkansas, Florida, and New Jersey each received grants of up to $500,000 from the Robert Wood Johnson Foundation to implement programs offering Medicaid personal assistance services consumers the choice of a cash benefit instead of agency-delivered services. Some major program characteristics are:
States are including both older and younger adults with disabilities. Florida also includes children and adults with developmental disabilities.
Arkansas and New Jersey are offering a cash alternative to their Medicaid Personal Care Option, whereas Florida is including three Medicaid Home and Community-Based Care Waivers.
Funds must be used for personal assistance services, such as personal care workers, home renovations, and/or assistive devices. Each participant develops a plan for the use of the cash. Funds can be carried over from month to month for large purchases or emergency needs.
Each state has determined the cash payment amount. States have generally followed current assessment and service planning practices, established the value of the individual service plan, and offered a cash amount approximating the amount consumers would receive in the traditional program. The average cost of the annual support plan at the time Florida was ready posed to design the CCDE, was $8,103 for adults receiving services from the Florida Department of Developmental Services HCBS Medicaid Waiver.
Counseling services are an integral part of the demonstration. They include services to help consumers decide whether to select the cash option, and for cash option participants, a flexible menu of supportive services is offered to help them manage employer responsibilities or locate home modification subcontractors, among others.
A three-part study consisting of presurvey focus groups, telephone surveys, and postsurvey focus groups was developed to determine consumers' and surrogates' preferences for consumer-directed services in general and specifically for a cash option. In Florida, the survey also assessed the amount and types of services consumers received under the Medicaid Home and Community Based Services Waiver.
There were 12,877 adults with developmental disabilities who received services in 1997 from Florida's HCBS Medicaid Waiver and Individual and Family Supports Program. Clients were classified by disability type as follows: mental retardation (12,090), cerebral palsy (567), autism (130), and spina bifida (78). To represent this population, we needed a sample size of 336 adults. The Florida Department of Developmental Services forwarded 1,707 randomly selected adult client names and telephone numbers to the University of Maryland's Interdisciplinary Health Research Laboratory so these adults could be invited to participate in the survey.
Because no survey existed that measured the perceptions of consumers with developmental disabilities about the CCDE option, we adapted a survey developed to assess preferences of older people and adults with physical disabilities (Simon-Rusinowitz et al., 1997). We were guided in this adaptation by three experts in developmental disabilities as well as individuals from 11 different consumer and surrogate focus group discussions (including one discussion with parents of children with developmental disabilities). Surrogates for adults with developmental disabilities were included in these focus groups. (Please see Zacharias, 1997a, 1997b, for a full discussion of focus group findings.) Although the literature addressing the involvement of persons with cognitive disabilities as survey respondents is inconsistent, several investigators have found that such persons can be capable of providing valid and reliable information and that it is inappropriate to assume that these individuals should be excluded (High, 1994; McHorney, 1996). Research is also inconsistent regarding the substitution of surrogates' judgments for those of consumers. However, Tomlinson, Howe, Notman, and Rossmiller (1990) found that when respondents representing older persons were explicitly asked to make a substituted judgment, they came significantly closer to the older person's preferences than those who were asked to make their best recommendations. Drawing on these results, in this study, we asked surrogates to have the consumer present if possible in order to obtain or clarify the responses they made on behalf of the consumer. Surrogates were also explicitly asked and reminded to answer for the consumer when the consumer could not be present and to answer for themselves only when the question called for their own opinions.
The 154-item survey consisted of four primary sections: frequency of and satisfaction with current services (58 items), perceptions regarding the CCDE option (29 items), demographic and background variables (32 items), and perceptions and demographics of surrogates (35 items). Depending on whether they were talking to a consumer or surrogate, interviewers read one of two different vignettes to explain the cash option to respondents. Each scenario described examples of how the cash benefit could be used. In addition, subsequent survey items informed respondents about various cash option features and support services. Background variables included a measure of functional status, an assessment of overall physical health; living arrangement; number of informal caregivers; and experience interviewing, training, hiring or supervising workers, among others. The instrument was pilot tested with adults who had developmental disabilities to ensure understandability and acceptability of items. The survey was also translated into Spanish because we expected (but did not find) that a relatively large number of Floridians would need/prefer to be interviewed in Spanish. Telephone interviews took place between November 1997 and March 1998. Questions were read from and data entered through an eight station network system of personal computers. On average, interviews lasted 40 minutes. Interviewer training included a 3-hour formal training session, an additional 3-day hands-on training, and continued supervisory monitoring.
Interviewers were trained and supervised to minimize the extent to which answers may be influenced. To standardize the data-collection process and increase interviewer consistency, each interviewer participated in a formal training sequence in general survey methodology, using the MaCATI software program, and specifics related to the CCDE Demonstration and Preference Study prior to calling respondents. Skill training included lectures, reading materials, demonstration, and 3 days of supervised practice. Specifically, interviewers were trained to (a) make contact with persons selected in the sample and enlist their cooperation; (b) orient respondents to the interview; and (c) manage the question and answer process (by reading questions exactly as written, probing for incomplete answers, and clarifying questions in a nondirective manner; recording answers without interviewer interpretation or editing; and maintaining a professional, neutral relationship with the respondent). Quality control was further aided with supervisor observation and direct monitoring of interviews. Limitations of telephone surveys have been documented, most importantly concerns center around problems with household coverage and nonresponse rates. At the same time, however, telephone surveys have been shown to be a better way to access populations that are difficult to locate. In a meta-analysis of data quality in telephone interviews versus face to face interviews, de Leeuw and van der Zouwen (1991) concluded that overall differences were small and becoming smaller over the years as the telephone becomes more and more a standard form of communication. However, as with any research technique, care should be taken to interpret results in the light of the particular strengths and weaknesses of the method employed.
Response Rate and Nonrespondent Data
The survey response rate was 53% (378 respondents, 333 persons who refused to participate). When asked why they did not want to participate, consumers or their surrogates gave the following reasons: not interested in participating in any survey (44%, n = 144); simply hung up without stating a reason (14%, n = 46); stated they were too sick, disabled, or old to help out (10%, n = 33); not interested in discussing their services (9%, n = 29); or believed the survey would take too long (7%, n = 24). In an attempt to determine whether participants were similar to nonrespondents, we compared these two groups on two items, age and average amount of money the state spent per person on services over a 9-month period (July 1, 1996 through March 31, 1997). Participants and refusers differed significantly on age but not on cost. Participants were significantly younger than refusers (Ms = 34 years, standard deviation [SD] = 9.6 years vs. 38 years [SD = 12 years]). Participants received $6,658 (SD = 5,688) and refusers received $7,213 (SD = $6,167).
Description of Survey Participants
The survey represented 378 adult consumers; 100 consumers answered the survey themselves, and the remaining 278 (74%) chose to have surrogates answer for them. Because surrogates agreed to answer on behalf of consumers for those items that asked for consumers' opinions and attitudes, these items were grouped with and analyzed as consumer responses. Other items asked for the surrogates' own opinions and were included in the analysis as surrogate responses. (Due to data-collection error, some surrogates were offered an additional “not applicable” response choice on some items that was not available to other surrogates or consumers. After determining that removal of these responses did not introduce sample bias, these responses were removed from analysis.)
Consumers were about equally divided between men (46%) and women (54%) and ranged in age from 19 to 82 years (mean age = 35). Seventy-three percent were European American, 22% were African American, and 3% were Hispanic. These ethnicity figures roughly correspond to information on participant composition received through the Florida Department of Children and Families, Division of Developmental Services, which indicates that of consumers eligible for the Home and Community Based Services Waiver, 74% were European American, 23% were African American, and 3% were other or unknown (Personal communication, Michael Freeman, Florida Department of Children and Families, Developmental Services Program, December 1999.)
The majority of consumers lived with parents (63%) and had informal caregivers (61%). Thirty-one percent had informal caregivers who lived with the consumer. Most consumers (79%) rated their overall health as “good,” “very good,” or “excellent,” with only 17% reporting “fair” or “poor” health. Consumers' functional status was measured by asking whether they needed help with five activities of daily living: bathing, dressing, toileting, transferring, and eating. For those responding to all questions (n = 364), individuals scoring between 0 and 1 were considered to have mild disabilities (73%), those with scores between 2 and 3 were considered to have moderate disabilities (16%), and those scoring between 4 and 5 were considered have severe disabilities (11%)
For each of 18 services, adult consumers were asked whether they currently received that service and were satisfied with the service. As can be seen from Table 2, two services were acknowledged as received by a majority of consumers: case manager services and transportation services. Other services received ranged from 5% who indicated that they received skilled nursing service to 28% who indicated that they received occupational therapy services. The average or mean number of services received was 3.7 (SD = 2.7). Approximately 57% (n = 216) of the sample responded to items concerning two additional services; adult day training and family care program subsidy (data were missing due to unsystematic data-collection error). Thirty-two percent (n = 119) indicated that they received adult day training services and of those, 96% (n = 114) were satisfied with the service. Five percent of respondents (n = 10) indicated that they received the family care program subsidy and of those, 90% (n = 9) were satisfied with the service.
In response to items concerning satisfaction with services, 79% of adult consumers indicated that they were satisfied with their current services (n = 300). Ten percent (n = 39) indicated that they were not satisfied and an additional 10% (n = 39) were not sure. The majority of adult consumers (59%, n = 224) indicated that the amount of services received is “just about right,” although 28% (n = 106) found the services “not enough,” and 6% (n = 24) indicated that they were “not anywhere near enough.” Two percent (n = 6) found the services “too much” and less than 1% (n = 1) indicated that the services were “way too much.” Five percent (n = 17) were unsure. Forty-five percent of adult consumers indicated that they would like greater say in the selection of services, although 42% did not want greater say and 13% were unsure. Thirty-five percent of adult consumers desired greater control over when services were received, although 58% did not desire greater control over scheduling and 6% were unsure.
The surrogate sample (n = 278) was older than consumers (range = 28 to 89, mean age = 58 years) and mostly female (90%). The majority (54%) were mothers, 20% were sisters, and 8% were fathers of consumers. Fifty-nine percent were married, and most surrogates (87%) lived with a spouse or children. The majority of surrogates completed high school (39%), trade or vocational school (5%), or attended some college (33%); only 18% did not complete high school. Surrogates' racial/ethnic backgrounds were similar to those of consumers.
Consumer Interest in the Cash Option
The cash option interest item was completed by 367 consumers or their surrogates. Approximately 44% (n = 42) of 96 consumers answering the item for themselves indicated interest in the cash option, whereas 27% (n = 26) were unsure of their interest and 29% (n = 28) were not interested. For 271 surrogates answering for consumers, 38% (n = 104) thought the consumer would be interested, 29% (n = 79) were not sure and 32% (n = 88) were not interested. Finally, when surrogates were asked for their own opinion, 45% (n = 120) were interested in the cash option, 23% (n = 62) were unsure, and 32% (n = 85) were not interested. Overall, then, 40% of the consumers (combining consumer and surrogate for consumer responses) and 45% of the surrogates (answering for themselves) indicated interest in the cash option.
The survey analysis focused on identifying consumer and surrogate characteristics and attitudes that influenced interest in the cash option. To gain this knowledge, we combined the responses of consumers responding for themselves with those of surrogates representing consumers. Chi-square analysis indicated that consumer interest in the cash option differed significantly by race, level of disability, satisfaction with current services, and consumers' desire for more “say” in selecting and scheduling services. Specifically, Hispanic and African American consumers were more interested in the cash option than were European American consumers (67%, 52%, 36%, respectively). Consumers with a severe disability rating were more likely to be interested in the cash option (61%) than were consumers with a moderate or mild disability rating (49% and 30%, respectively). Consumers who were most dissatisfied with their current services had the greatest level of interest in the cash option (61%) when compared to those who were satisfied or unsure about their current services (37% and 36%, respectively). Consumers who wanted more say in selecting their services were more interested in the cash option (52%) than were those who were unsure and/or did not want more say (29% and 30%, respectively). The same was true for consumers wanting more control over scheduling services, with 54% interested in cash, compared to those who were unsure or who did not want more control (37% and 31%, respectively).
Satisfaction with current services was measured by asking consumers (or their surrogates) to indicate the consumer's agreement or disagreement with the following three statements, each of which began with “one of the things I don't like about the services I currently receive is that…” (a) the agencies providing them don't inform me of changes being made, (b) the people providing them are not properly trained, and (c) often the workers and I don't speak the same language. Overall, 17% (n = 63) of respondents agreed with the first statement, 11% (n = 43) with the second, and 6% (n = 21) with the third. Consumers' agreement with either of the first two statements was significantly associated with their interest in the cash option, however, agreement with the third statement was not. Of consumers who felt that agencies did not inform them of changes, 57% were interested in cash. For consumers who felt that workers were not properly trained, 58% were interested in the cash option.
Chi-square and correlational analyses indicated that consumer interest in the cash option did not differ significantly by the following consumer variables: age, gender, education level, marital status, living arrangement, home ownership, presence of informal caregivers or live-in informal caregivers, past or present employment status, experience supervising or training and hiring or firing workers, self-rating of overall health status. number of different services received (see Table 2), number of different services with which one is dissatisfied, or average cost of services during a 9-month period.
A multivariate analysis (logistic regression) was conducted to predict consumer interest in the cash option. Interest in the cash option was collapsed to test for significant differences between those who showed some interest in the option (“interested” and “not sure” responses) versus those who responded “not interested.” The most important variable predicting consumers' interest in the cash option was consumers' desire for greater “say” in the selection of services; consumers with this desire were 3.8 times as likely to indicate some interest in the option as those who did not. The second most important influence was the consumer's race; consumers who were other than European American were 2.6 times as likely to be interested in the cash option as were European-Americans. Finally, the consumer's functional status, as measured by the activities of daily living scale, influenced interest in the cash option. Consumers who scored in the severe range on this scale were 2.5 times as likely to indicate some interest in the cash option versus those who scored as having mild or moderate disabilities. These three factors predicted with 78% accuracy consumers who were interested or not sure of their interest in the cash option and with 52% accuracy those who indicated they were not interested, for an overall accuracy of 70%, Model χ2 (3, N = 346) = 38.92, p < .001) (see Table 3).
Surrogate Interest in the Cash Option
As with consumers, surrogate interest in the cash option differed significantly by race. Of the 10 Hispanic and 56 African American surrogates, 60% and 59%, respectively, were interested, whereas only 41% of the 195 European American surrogates were interested. Surrogate interest also differed significantly by the age of the consumer. As consumer age increased, surrogate interest decreased. Similarly, although not statistically significant, surrogate interest decreased with increasing surrogate age. In addition, surrogate interest differed by the surrogate's desired level of involvement in determining the amount and type of services received. The 44% (n = 118) of surrogates who desired more involvement were more likely to be interested in the cash option (68% were interested) than were the 32% (n = 85) who wanted the same level of involvement or the 21% (n = 56) who were unsure.
Surrogates were asked a series of questions to assess their willingness to perform tasks associated with the cash option (i.e., hire, train, schedule, supervise, pay, and fire one's own worker). Fifty-two percent (n = 122) of surrogates were willing to perform all six tasks, and an additional 16% (n = 37) were willing to perform five of the six; 18% (n = 41) were unwilling to perform any of the tasks. Surrogates interested in the cash option were significantly more likely than those not sure or not interested to be willing to perform each of these tasks (ranging from 82% to 93%). No significant differences were found for the surrogates' willingness to perform duties associated with the cash option by the age of the surrogate.
Surrogates' interest in the cash option did not differ significantly by gender, education level, marital status, relationship to the consumer, or living arrangement. Finally, surrogates were asked whether they thought the cash option would make it easier or harder on them. Thirty-two percent believed that the option would make their job easier, whereas 21% believed it would be harder, and 47% were not sure. Surrogates who were interested in the cash option were more likely to believe that the option would make things easier for them (82%) when compared to those who were not interested (8%). Of those surrogates who thought the cash option would be harder (n = 50), 9 were nonetheless interested, and 5 of these surrogates indicated that the extra effort would be worthwhile.
A separate multivariate analysis (logistic regression) was conducted to predict surrogate interest in the cash option. The primary influence on surrogates' interest was their belief that the cash option would offer more flexibility and independence for themselves, with surrogates who agreed with this statement being 4.9 times as likely to be interested in the cash option as those who disagreed or were unsure. Surrogates' belief that this option would be easier for them also predicted surrogate interest; those who believed the cash option would be easier were 3.9 times as likely to be interested in the option as those who believed it would be harder or did not know. Surrogates' willingness to perform tasks associated with the cash option was also an important predictor of interest. These three factors predicted with 71% accuracy surrogates who were interested in the cash option or unsure of their interest and with 84% accuracy those who not interested, for an overall accuracy of 85% (Model χ2(3, N = 267) = 129.76, p < .001.
Attractive Program Features and Services Consumers Want to Purchase
Consumers were asked about the importance of two program features: knowing a group of other cash option consumers and the ability to back out of the cash option. Consumers interested in a cash option were likely to want to know a group of consumers receiving a cash benefit (80%) and to be able to back out of the cash option should they desire (76%). Surrogates were asked about two additional items: the importance of hiring the consumer's current worker and the importance of paying the worker more than his or her current amount. Interested surrogates were likely to consider it important to know others in the option (93%), be able to back out of the option (92%), to hire the current worker (74%), and to pay the worker more money (52%).
Consumers were also asked whether three program characteristics would make them interested in the cash option, namely, whether they would have the ability to “get services on the days and times you want them,” “hire whomever you want to provide personal care services, even a friend or relative”, and “buy different services.” Eighty-six percent of those interested in the cash option thought the first program characteristic would make them interested, 86% of those interested thought the second characteristic would make them interested, and 81% of those interested indicated that the third program characteristic would make them interested.
Surrogates were also asked a series of questions to determine reasons for their interest in the cash option, including whether cash would offer more flexibility for the surrogate. A majority of surrogates interested in the option agreed with the various items included in this series: thinks consumer would like to participate (82%), cash could offer more flexibility for consumer (90%), cash could offer more flexibility for surrogate (89%), likes cash to interview and hire (92%), and likes cash to hire whomever consumer wants, even friend or relative (90%).
Consumers, or their surrogate representatives, were asked about their interest in purchasing various services. A majority of respondents who were interested in the cash option wanted to purchase transportation services (77%), someone to keep the consumer company (66%), exercise equipment (62%), more hours of personal care services (56%), and housekeeping services (51%). Forty percent of those interested in the cash option were interested in purchasing grab bars or shower equipment; 39% were interested in purchasing home modifications; 29% were interested in wheelchairs, beds, or other equipment; and 27% were interested in purchasing laundry services.
Consumer and Surrogate Training and Support Needs
The majority of interested consumers (n = 146) wanted assistance or training in each of the seven tasks associated with the cash option, ranging from 60% who indicated a need for help or training for firing a worker to 77% who indicated a need for help or training with performing a background or quality check. Surrogate training needs were also examined. Among the 120 surrogates interested in the cash option, responses ranged from 43% indicating a need for help with firing a worker to 80% indicating a need for help performing a background or quality check on a worker.
Overall, before deciding to be involved in the cash option, the majority of consumers (regardless of their interest level) wanted more information. Ninety-three percent of interested consumers (or their surrogates) wanted to know more financial details. Ninety-five percent wanted to know whether their current worker could be retained, 95% wanted to know how other current benefits they receive would be affected, and 94% wanted to know more about their rights and responsibilities under the cash option.
Survey results guided Florida in designing numerous aspects of the CCDE demonstration; however, in this discussion we focus on the implications of survey findings for Florida's critical communication efforts. Survey data helped provide answers to two broad questions: How can Florida reach those adult consumers with developmental disabilities and their surrogates that are most interested in the cash option? What messages should Florida emphasize in its communication efforts?
Targeting Interested and Uncertain Consumers and Surrogates
Frequency data from the survey clearly guided Florida's informational efforts. Findings assured us that adult consumers with developmental disabilities would contribute toward Florida's ability to comfortably achieve evaluation enrollment targets by focusing on those 40% of consumers who indicated an initial interest in the cash option. (Data were combined for all racial and ethnic groups because ethnicity is not a sampling criterion for Florida's target enrollment.) Extrapolating to a consumer population of 12,877 indicates that 5,151 consumers are likely to have some level of interest. In addition, 28% of consumers were unsure of their initial interest in the cash option, which represents approximately 3,606 additional potential consumers. These numbers surpass Florida's target enrollment for adults with developmental disabilities, namely, 1,315 current consumers and 500 new consumers.
Additional data from the survey helped Florida learn more about what information would be needed to help the “unsure” population make a well-informed decision to choose the cash option or stay with their current program. Knowing that 29% of consumers had less than a high school education and 30% had not gone beyond high school served as a reminder that outreach and training materials must be simple and straightforward (and/or many consumers may need the assistance of surrogates and direct contact with counselors). In addition, the majority of surrogates had either not completed high school (18%) or had not gone beyond high school (39%).
We found that Hispanic and African American consumers were more interested in the cash option than were European American consumers (67%, 52%, and 36%, respectively). Surrogate interest varied by race in the same order. Although race is not a sampling criterion for Florida's target enrollment, this information may help this state to target those groups with higher initial interest and explore further reasons for lower interest among European Americans.
The 41 consumers with the highest level of disability were the ones who were most interested in the cash option (61%). However, the majority of consumers reported a mild level of disability (73%, n = 264). This information guided Florida to include consumers with all different levels of disability in communication efforts; however, program workers needed to focus on reaching the small, most severely disabled group and learning more about factors that would help those consumers with mild disabilities feel comfortable with the cash option.
Several other key factors required further exploration to guide communication efforts. Survey data indicated high levels of interest in the cash option among surrogate decision-makers when expressing their own views, yet somewhat lower interest when surrogate decision-makers were representing those of consumers. These data indicate the importance of learning more about the reasons for surrogates' high level of interest in the cash option when speaking for themselves and why some report that the consumer may be less interested in the cash option. This information is especially important as 82% of surrogates interested in the cash option thought the consumer would want to participate, indicating that consumers' interest would be important to surrogates' support. It was also important to learn more about the role of surrogates in working with a consumer to choose the cash option. As 97% of surrogates were a close relative of a consumer, it was reasonable to believe that these persons would be influential in helping a consumer make decisions about his or her personal care. One possible surrogate role may be an emergency back-up worker if the paid worker does not come to work, an important concern expressed by consumers. Another possible surrogate role may be that the consumer would want to hire the surrogate as a paid worker, or the surrogate may, to the contrary, see the cash option as a way to provide an occasional break from their own caregiving responsibilities by purchasing respite services. Further understanding of the surrogate role could help Florida develop messages that address surrogates' high level of interest and possible concerns.
We also believe that it is important to explore reasons why surrogates' interest in the cash option decreased as consumer and surrogate age increased. One explanation may be that parents of aging adult consumers, who are themselves older, may be worn out from many years of caregiving. These individuals may be uninterested in an option that requires more of their time and energy. However, to the contrary, surrogates' willingness to perform cash option tasks did not differ significantly by the surrogates' age. In addition, aging surrogates may be increasingly aware (and fearful) that they will not always be around to help in the care of their adult child.
Messages to Emphasize
Survey data offered direction regarding messages to emphasize with consumers and surrogates. First, due to the many doubts expressed about consumers' abilities to complete the survey by themselves, it is noteworthy that 100 adult consumers completed the survey without surrogate assistance. Consumers who were dissatisfied with their current services were most likely to be interested in the cash option, indicating one avenue for introducing the new option. However, Florida was fortunate that 79% of consumers were satisfied with their current services. Thus, only a small percentage of consumers would respond positively to messages directed at those dissatisfied with their current services. Consumers who desired more say in selecting their services (45%) and those who desired greater control over scheduling their services (35%) were more likely to be interested in the cash option than were consumers wanting less involvement with these aspects of their care.
Surrogates' interest in the cash option was related to three variables (in descending order of importance): (a) surrogates' belief that the cash option would offer more flexibility and independence for them; (b) surrogates' willingness to assume responsibility for employer tasks involved in the cash option; and (c) surrogates' belief that the cash option would make it easier on them. For those surrogates who thought the cash option would be harder, interest in cash was related to a belief that the extra effort would be worthwhile. To help develop these tailored messages, Florida will explore how the cash option could be easier for surrogates, whether extra effort would be required of them, and what aspects would make the effort worthwhile.
Cash option characteristics that were attractive to interested consumers provided further direction regarding informational messages (and more important, direction for designing the cash option). For example, effective materials would be sure to address the ability to “get services on the days and at the times you want” and “hire whomever you want to provide personal care services, even a friend or a relative” as the vast majority of interested consumers found these program characteristics appealing. Finally, interested consumers also found the ability to “buy different services” an attractive program feature, especially transportation services, someone to keep them company, exercise equipment, more hours of service, and housekeeping services.
Surrogates' reasons for being interested in the cash option also offer messages to include when addressing that group. Materials should highlight the ability to interview and hire workers, increased flexibility for consumers and surrogates, the ability to hire a friend or relative, and surrogates' belief that consumers would like to participate in the cash option. Consumers and surrogates interested in the cash option also thought it was important to have peer support from other cash option consumers, and they wanted to know that they could back out of the option if they wanted to return to the traditional program. In addition, it was important to surrogates to know that, should they want to, surrogates could pay the worker more than she or he currently receives.
Finally, interested surrogates considered it important to be able to hire the consumer's current worker should they choose the cash option, thus informing Florida that the state needs to address this difficult issue in their materials. The Florida survey points to surrogates' and consumers' strong desire to have the ability to hire the consumer's current worker. Focus group participants frequently described problems with former workers and explained that when they had a worker whom they liked, they wanted to continue with that person. Yet, difficult organizational issues are likely to interfere with this consumer preference. Most importantly, provider agencies may inhibit this practice. In addition, a worker may need full-time employment and only work part-time hours for a specific consumer. This issue is likely to be less important for new consumers entering the Medicaid program because they would be less attached to an existing arrangement.
Consumers and surrogates interested in the cash option were likely to express a need for help or training in employer tasks. Materials should inform consumers and surrogates that they can have help or training with the most requested tasks: doing a background check, helping to decide how much to pay a worker, filing payroll taxes, finding a worker, planning what to do when a worker does not show, as well as interviewing and firing a worker. As the majority of consumers wanted more information before deciding whether to choose the cash option, media and in-person communication should be as specific as possible regarding the following issues: consumers' rights and responsibilities under the cash option; how other current benefits would be affected; cash option financial details, including the exact amount of the cash benefit; and how the current worker would be affected.
The CCDE project planners had some concern about the difficulty of explaining randomization to consumers and the possibility that randomization would be a deterrent to choosing the cash option. Survey findings dispelled these concerns to a large degree because 73% of those interested in the cash option were willing to sign up even if there was a chance they might not be selected. After the survey, materials explaining randomization were tested to be sure they were clearly understood.
The CCDE is a policy-driven project addressing numerous policymaker concerns. Although comprehensive recommendations will not be available until the evaluation is complete, the Florida survey with adult consumers who have developmental disabilities and their surrogates offered insight into policy issues concerning the importance of offering consumers a choice of personal assistance services options as well as insights regarding potential fraud and abuse as well as service quality.
The CCDE is based on the premise that the cash option is a choice available to those consumers who want consumer-direction. It is not intended to replace traditional services because the cash option is unlikely to be appropriate for, or desirable to, all consumers. The Florida survey findings support this perspective. Although 40% of consumers and 45% of surrogates expressed a preliminary interest in the cash option (a sizable amount), many others were uncertain or not interested. This demonstration may also be viewed as a pioneering effort to test consumer-direction for persons traditionally not considered to be entirely self-directing.
Fraud and abuse concerns, related to the possibility that consumers or their families might misuse the cash benefit or be exploited by others (Doty, 1997), must also be considered. Although the Demonstration personnel are addressing these concerns, procedures to minimize fraud and abuse were designed to maintain the consumer empowerment principles being tested in the project. Overly restrictive measures would negate the effect of the consumer-directed intervention.
Misuse of the cash benefit includes the possibility that consumers might not pay taxes for their workers. Florida survey data indicated that these possibilities were limited because a majority of consumers and surrogates interested in the cash option said that they would want help or training with pay roll and taxes (73% of each group). More precisely, most clients are likely to elect to have the pay-rolling and tax withholding for their workers done for them by accounting professionals. This would greatly reduce the amount of cash that consumers directly receive and manage because the accounting service would pay the worker's salary and taxes directly from the cash grant (Doty, 1997). Those consumers electing not to use accounting professionals will need to participate in a training program and demonstrate competency in pay-rolling tasks.
To prevent consumer exploitation by others (and subsequent suffering of ill effects), developers of the cash option allow and encourage the use of surrogate decision-makers to represent consumers who are unable to make all decisions independently. (Surrogates are not paid for their assistance.) Although there are many questions to consider regarding surrogate decision-makers, we know from the Florida survey that 74% of adult consumers with developmental disabilities utilized surrogates, and 45% of surrogates responding for themselves (versus when representing a consumer) were interested in the cash option. In the event of possible exploitation by a surrogate, it is important to note that under the cash option, counselors will have a role in monitoring all consumers—even those with surrogates.
For those consumers functioning independently, without surrogates, the cash option training and support services offer further protection against consumer exploitation. When asked whether they would want help or training with various cash option tasks, the vast majority of consumers who were interested in this option wanted these support services, and Florida requires all consumers and surrogates to participate in some training.
Florida survey respondents found the ability to “hire whomever you want to provide personal care services, even a friend or relative” an attractive feature of the cash option. This finding indicates that consumers are likely to hire friends or relatives as their workers. Policymakers often raise concerns about the quality of care provided by friends or relatives who may lack formal training. Yet, a study of California's In-Home Support Services Program (Barnes & Sutherland, 1995; Benjamin, Matthias, & Frank, 1998) found that consumers rated family members and friends as more reliable than workers who were strangers. In addition, in a 3-state study of older Medicaid personal-care recipients (Michigan, Maryland, and Texas), Doty, Kasper, and Litvak (1996) found that client satisfaction was related to several indicators of greater client control and, specifically, to Michigan's policy of encouraging clients to hire family, friends, and neighbors as attendants. The Florida survey indicated that the CCDE will further our understanding about the quality of services when friends and relatives become paid providers.
In this report we have presented results from a telephone survey conducted to assess the preferences of adults with developmental disabilities for a cash option versus traditional services in Florida, one demonstration state in the CCDE project. To our knowledge, it is the first study in which the interest of consumers with developmental disabilities in a cash option has been assessed and the types of supports consumers and surrogates desire to carry out required tasks identified. Survey findings have informed program planners about consumers' and surrogates' preferences about the cash option and guided Florida in designing it. The findings have also been beneficial in the development of much needed communications materials. These efforts are essential to informing Florida consumers about the cash option so they can make informed decisions to choose a consumer-directed option or stay in the traditional program. We look forward to continued learning about consumers' interest in and satisfaction with a cash option (versus traditional services) as the demonstration project proceeds and the choice is real, not theoretical.
Much of the section on existing personal assistance service programs comes from background materials written by Pamela Doty, The CCDE's Project Office at DHHS/ASPE, during the project development phase.
Authors:L. Simon-Rusinowitz, PhD, Deputy Project Director, and K. J. Mahoney, PhD, Project Director, Cash & Counseling; D. M. Shoop, PhD, Faculty Research Associate; S. M. Desmond, PhD, Associate Professor, Department of Health Education; M. R. Squillace, PhD, Faculty Research Associate, University of Maryland Center on Aging, HHP Building, College Park, MD 20742. J. A. Sowers, PhD, Principal Investigator, Center on Self-Determination, Oregon Institute on Disability and Development, 3608 S.E. Powell Blvd., Portland, OR 97202.