EXECUTIVE SUMMARY

In the past several years, consumer-directed long-term care services, like cash and counseling, have stirred the interest of a number of groups. This paper presents findings from a survey of state administrators (n=257) of departments of aging, Medicaid, mental retardation/developmental disabilities (MR/DD), and vocational rehabilitation (VR) in all 50 states and some U.S. territories. All were asked about their knowledge, attitudes and practices regarding consumer-directed programs and cash and counseling. Most state administrators who responded to the survey were aware of the concept of consumer-directed services (92%), although fewer (80%) reported that they had specific knowledge of cash and counseling services. Nearly 71% expressed an interest in advancing consumer-directed programs, however, there were perceived disadvantages primarily concerning lack of oversight and quality assurance issues. It is interesting to note that Medicaid administrators were the only group that had a relatively high response rate regarding concerns of fraud and abuse, which is one of the most common concerns about cash and counseling.

OVERVIEW

Consumer Direction

Consumer-direction is a concept that has its roots in the independent living and disability rights movements. It subscribes to the belief that consumers are the best judges of their needs, and, therefore, able to make the best decisions about how those needs should be met. The central tenets of consumer direction are twofold. First, elderly and/or disabled consumers should be guaranteed flexibility in the delivery of long-term services, which means that the services they receive should be tailored to meet individual needs. Second, consumers should be guaranteed choice of services and providers, thereby ensuring that their needs are met in the best possible manner. The National Institute on Consumer-Directed Long-Term Services defines consumer direction as follows:

"Consumer direction may exist in differing degrees and may span different types of services. It ranges from the individual independently making all decisions and managing services directly, to an individual using a representative to manage needed services. The unifying force in the range of consumer-directed and consumer choice models is that individuals have the primary authority to make choices that work best for them, regardless of the nature and extent of their disability or the source of payment for services."

Cash and Counseling

Cash and counseling is a form of consumer direction in which disabled persons over the age of 18 receive cash benefits to purchase a wide range of services. Many European nations and most Western industrialized countries provide some form of cash disability allowance for long-term services, like attendance allowances. Attendance allowances were first adopted by agencies responsible for handling the affairs of war veterans.³ Enacted in 1951, the Housebound Program and the Aid and Attendance Program of the U.S. Department of Veterans Affairs also began providing cash payments to veterans with disabilities to meet their long-term service needs. According to Cameron and Firman (1995), this is the only federally funded program of cash benefits in the United States.⁴

Cash and counseling, like the Housebound Program and the Aid and Attendance Program, allows consumers to receive cash benefits to purchase a wide range of services. However, the element of counseling contributes to another dimension that is slightly dissimilar to the programs provided by the Department of Veterans Affairs. The goal of counseling is to assist consumers in making informed choices about a wide range of issues such as financial management and personal assistant training. In some programs counseling is optional however, it is considered a crucial component to this particular model of consumer direction. The extent of counseling provided to cash recipients may vary over time. For example, an individual who is new to cash and counseling may want more counseling in the beginning than an individual who has been in the program for a period of time.

The availability of a cash and counseling option will allow consumers to gain greater control over their services and expand their means to live independently. Like consumer-directed programs, the two key concepts for cash and counseling programs are flexibility and choice.⁵

Exploring various aspects of consumer direction, like cash and counseling, is one critical step towards implementing more comprehensive models of long-term services.

This report describes the results of a survey distributed in 1996 to administrators of state departments on aging, Medicaid, mental retardation/developmental disabilities, and vocational rehabilitation in all 50 states and some U.S. territories. The results of the survey are intended to provide information about consumer direction and cash and counseling to the professional public, policy makers, and various aging and disability groups.

I.  BACKGROUND

Aided by funding in the form of waivers and demonstration projects from the federal government and private organizations, states and localities are experimenting with consumer-directed approaches to the delivery of long-term services. Consumer-directed programs, like cash and counseling, have the potential to redefine and reshape our understanding of what choice, control and consumer service mean. However, more systematic research on such programs is needed to fully understand the implications of this new way of providing personal home and community-based services. For the purposes of this project, several questions were directed towards state administrators:

1. Do they currently administer any programs that have consumer direction and/or cash and counseling options?
2. To what extent are they familiar with other domestic and international programs using consumer direction and/or cash and counseling approaches.
3. How interested are they in developing these approaches for their state?
4. What do they perceive are the major opportunities and barriers of these approaches?
5. Would they be interested in more information and/or technical assistance about cash and counseling or consumer direction programs?

NCOAís interest in consumer direction stems from earlier field-initiated research on cash and counseling. With support from the Robert Wood Johnson Foundation, this research identified national and international models of cash and counseling. NCOA is continuing work in this area; however, the emphasis is now on states which are currently developing and/or implementing consumer-directed services and cash-based models.

In 1996, NCOAís National Institute on Consumer-Directed Long-Term Services conducted a survey entitled Research on Cash and Counseling Models for Americans with Disabilities, which was funded through a grant by the National Institute on Disability and Rehabilitation Research (NIDRR) at the U.S. Department of Education. One of the goals of the consumer direction survey was to assess the knowledge, attitudes and practices of aging and disability state programs regarding consumer direction and cash and counseling. The survey identified features of existing consumer-directed and cash and counseling programs; examined attitudes of administrators and their interest in employing these approaches; and explored perceived advantages and disadvantages of implementing consumer directed programs. The following report provides a detailed analysis of the 1996 survey results.

A. Sample

Two hundred and fifty-seven state administrators from all fifty U.S. states and some of its territories were surveyed based on the fact they all provide home and community-based long-term services. Surveys were sent out to the following four departments in each state: aging, vocational rehabilitation (VR), medical assistance including Medicaid (MA), and mental retardation and developmental disabilities (MR/DD). Mailing lists for state administrators were obtained from the following organizations: National Association of State Units on Aging, National Public Welfare Association (for Medicaid administrators), National Association of Developmental Disabilities Directors, and National Institute for Disability and Rehabilitation Research (for vocational administrators).⁶

B. Design and Questionnaire

Questionnaires were used to collect base-line information on consumer direction and cash and counseling models. The ten-page survey instrument was first sent out to a pilot group composed of 10 state administrators and then distributed in April 1996 to a larger sample of 247 state administrators.

Each survey instrument contained a separate fact sheet on consumer direction and cash and counseling (one page). The first set of survey questions pertained to respondentsí familiarity with consumer direction and cash and counseling. Those administrators who were aware of consumer-directed services and/or cash and counseling were surveyed about the specifics of their programs, e.g., financing, the types of services provided, program benefits and quality assurance.

All respondents were asked questions regarding their attitudes about consumer direction. Specifically, they were asked to list advantages and disadvantages of consumer-directed home and community-based services from the perspective of the agency providers (e.g., home healthcare agencies), independent providers (e.g., non-agency providers), informal caregivers (e.g., family and friends), and consumers. Moreover, the survey explored whether or not there were departmental interests in either establishing or further developing consumer-directed services for persons with disabilities. Finally, state administrators were asked to list the kinds of technical assistance that they thought is needed in order to implement consumer direction programs.

III. RESULTS

An overall response rate of 66% was achieved, with replies coming from all 50 states, the District of Columbia and some U.S. territories. Broken down by administrative units, the response rate was as follows: 45 state units on aging (77%), 48 state units on vocational rehabilitation or commission on the blind (62%), 36 state units on medical assistance (61%) and 33 state units on mental retardation/developmental disabilities (62%). Survey responses were completed by either the administrator or by his/her assigned representative. Representatives were, in most cases, program managers responsible for their departmentís home and community-based service programs.

The report begins by examining two major areas of survey results: (a) the extent and nature of consumer directed programs and (b) the attitudes of state administrators on key issues regarding these programs. Then an analysis of the implications of the survey will be presented. Finally, the report will conclude with a discussion of issues related to the future of consumer-directed programs in the U.S., as well as a few comments about the goals and the nature of the follow-up survey.

A. Extent and Nature of Consumer-Directed Programs

The following section discusses a number of general issues related to consumer direction such as: knowledge and prevalence of consumer direction, funding sources, services offered by consumer-directed programs, service providers, provider reimbursement, choice-related features, and quality assurance.

1. Prevalence of Consumer-Directed Programs

One of the basic goals of the NCOA survey is to assess the current level of knowledge of consumer-directed services among state administrators. As demonstrated by the survey, most administrators are familiar with these concepts (92%). A smaller number (80%) reported knowledge of cash and counseling.

Few significant differences in knowledge of consumer direction are detected among the four types of agency administrators. However, of the four groups, more VR administrators reported having no knowledge of consumer direction. Similarly, VR administrators are the most likely to report that they are unaware of the major concepts of cash and counseling models (Table 1).⁷

Table 1. Awareness of Cash and Counseling and Consumer Direction

	Aging	VR	MA	MRDD
Awareness of Consumer Direction	93%	85%	97%	94%
Awareness of Cash & Counseling	84%	12%	83%	85%

2. Nature of Consumer-Directed Programs

Administrators were then asked if their states offer consumer direction and/or cash and counseling programs. Sixty-two percent of the total number of respondents stated that they offer consumer-directed programs, whereas, far less reported offering cash and counseling programs (22%). Of the four categories of administrators, MR/DD administrators are the most likely to offer consumer-directed programs (80%). In contrast, Aging programs are the least likely to offer consumer-directed programs (49%).

Table 2. Availability of Consumer Direction Programs

Aging	VR	MA	MR/DD
49%	54%	58%	80%

3. Program Funding

Another major goal of this survey is to gain a better understanding of the sources of program funding. State administrators were asked to identify sources of funding they use to operate their consumer direction programs. Choices of funding sources presented were: federal (including Title XIX Medicaid, Title XX Social Services Block Grant, Title III Older Americans Act and the Rehabilitation Act); state and local (including state, county, municipal and tribal funds); or other such as foundation grants and client contributions (cost sharing). Survey results revealed that consumer-directed programs are generally funded through a mix of sources. About one fourth (26%) of these programs rely exclusively on state and local funding, while a somewhat smaller percentage (20%) rely on federal funds. Over half of the programs (54%) receive a combination of federal, state, local, and other sources of funding.

4. Covered Services

Consumer-directed programs offer a number of different types of long-term services including the following: personal care, homemaker, paramedical, skilled nursing, rehabilitation therapy, and respite care. Personal care and homemaking services are mentioned most frequently by state administrators. Indeed, 85% of the agencies offer personal care services and 77% offer homemaking services. In general, programs operated by state units on aging tend to have the greatest range of services, while VR programs tend to have the smallest range of services. One interesting finding is that a substantial number of consumer-directed programs include respite services. For example, nearly half of these programs types in Aging (44%) stated that they provide respite services, while approximately one third of MA and MR/DD programs identify respite care as a covered service (Table 3).

Table 3. Covered Services by Administrative Category

	Personal Care	Homemaker	Paramedical	Skilled Nursing	Respite
Aging	94%	100%	78%	56%	44%
VR	56%	44%	48%	24%	4%
MA	96%	75%	68%	39%	36%
MRDD	87%	87%	61%	45%	32%

5. Service Providers

Consumer-directed programs employ a range of provider types such as formal agency providers, independent providers, and informal caregivers. Survey results yielded information on the differences in the extent of utilization among the four program types.

Aging programs that utilize a consumer-directed approach are more likely to use agency providers (89%) than the other administrative categories. Further, Aging programsí use of independent providers is relatively high (83%). MR/DD programs also have a high rate of independent provider usage (94%) and are also the most likely to use friends or neighbors as providers (81%).

More than half (59%) of consumer-directed programs permit relatives to provide services, with MR/DD using this provider mode the most often (68%). Programs that allow relatives to provide services (62%) reported that they do not restrict any categories of relatives (e.g., spouses or parents) as service providers.

6. Provider Reimbursement

Most consumer-directed programs make use of three forms of reimbursement: reimbursement from the state to the provider; use of vouchers by consumers to reimburse providers; and direct payment by consumers to providers. The most common form of provider reimbursement is the most traditional one, payment from the state to the provider (75%). Of the four agency types, MR/DD programs reported the most extensive use of direct payment (87%).

Overall, the voucher method of reimbursement is the least common, with a 24% utilization rate. Vocational Rehabilitation programs reported using vouchers the least (8%), while MR/DD programs use them the most (45%). In 34% of the programs, consumers pay their providers directly, with MR/DD programs utilizing this mode most frequently (39%). It is important to note that the availability of a direct payment option does not necessarily indicate that a cash and counseling model is in effect (Table 4).

Table 4. Programsí Use of Reimbursement Methods

	State Reimburses Provider Directly	Consumer uses Voucher to pay Provider	Consumer Pays Provider Directly
Aging	72%	22%	33%
VR	64%	8%	36%
MA	75%	14%	29%
MRDD	87%	45%	39%

7. Program Choice Features

State programs were examined for the presence of key tenets of consumer direction. Administrators were asked questions about the availability of five particular features: choice over providers, choice of services, control over schedules, and information and counseling about service options.

Choice over providers is a program feature that nearly all state administrators reported offering (95%). A slightly smaller percentage of program administrators (90%) offer two additional features, choice over services and control over schedules. Most VR programs provide these two features (96%), although the MR/DD programs are the least likely to include them in consumer-directed programs (77%). A final, and important feature, is information and counseling about service options. In order to make appropriate decisions about services and providers, consumer direction advocates argue that long-term service consumers must be provided with sufficient information. This important aspect of consumer direction appears to be the least prevalent. Only 70% of the programs offer information and counseling about service options, with MA programs reporting it the least (57%) and MR/DD programs reporting it the most (77%). 

8. Quality Assurance

Questions about quality assurance are highly relevant to consumer-directed programs because of the perception that these programs have less oversight than traditional programs. Therefore, it is important to determine whether or not consumer-directed programs have adequate quality assurance strategies. Administrators were asked to identify which of the following quality assurance methods are incorporated into their programs: case/care management, consumer training, program evaluation, consumer satisfaction, and caregiver training.

Most administrators reported using three methods: ongoing monitoring through case/care management (82%), program evaluations (68%), and consumer satisfaction assessments (74%). Aging programs are most likely to use traditional case/care management to ensure quality (89%). Less than a third of the programs (31%) use consumer training for quality assurance, i.e., educating consumers so they can monitor their own services. A majority of VR programs offer training for consumers (56%), whereas few Aging (11%) and MA programs (14%) utilize consumer training. While many VR programs provide training for consumers, it is not necessarily consumer direction- oriented.

A less common quality assurance mechanism is training for caregivers. Only slightly less than half (48%) of the programs have either mandatory or optional training for caregivers. Approximately one third of MA and Aging programs (32% and 38% respectively) offer this training feature, while nearly two thirds of MR/DD and VR programs (61% and 60% respectively) provide it (Table 5).

Table 5. Quality Assurance Program Features by Administrative Category

	Traditional Case/Care Management	Consumer Training	Program Evaluation	Consumer Satisfaction (+ Surveys etc.)	Caregiver/ Provider Training
Aging	89%	11%	56%	67%	38%
VR	72%	56%	68%	84%	60%
MA	82%	14%	71%	71%	32%
MRDD	80%	38%	68%	68%	61%

B. Attitudes of State Administrators

The survey explored the viewpoints of state administrators on major issues related to consumer direction. Specifically, state administrators were asked for their opinions on the advantages and disadvantages of consumer-directed services over traditional long-term services programs. Further, they were asked to speculate on what these advantages and disadvantages might be from the perspective of other groups concerned with home and community-based services. These groups are the following: agency/for-profit providers, independent/for-profit providers, informal caregivers, and consumers of consumer-directed services.

1. Personal Attitudes of State Administrators

State administrators' personal views and attitudes on the advantages of consumer-directed services mentioned most often were fourfold: they enhance consumer empowerment, autonomy and independence; they have the potential to reduce program costs; they enable services to be tailored to consumersí needs and preferences; and they improve customer satisfaction.

Administrators frequently cited the following disadvantages: they could be difficult to monitor in terms of oversight and quality assurance; they could result in fraud and abuse; they could be difficult to implement; and they could pose problems to consumers in terms of difficulty managing their own care.

Some disadvantages were perceived similarly across administrative categories. Half of the respondents replied that consumer-directed programs enhance consumer empowerment, autonomy, and/or independence. Nearly one-third of respondents (32%) consider cost effectiveness to be an advantage of these programs. The disadvantage most commonly cited by administrators is the of lack quality assurance and oversight (44%). Individuals in all four administrative categories share this concern. Twenty-one percent of all respondents note the increased potential for fraud and abuse as an additional disadvantage. Table 6 displays all of the major advantages and disadvantages reported in this section of the survey.

Table 6. Percentage of State Administrators' Personal Views on Consumer Direction

Advantages of Consumer Direction:

• Enhance consumer empowerment, autonomy and/or independence 51%
• Potential for cost effectiveness 32%
• Flexibility and tailors services to match consumer needs and preferences 27%
• Improves consumer satisfaction 18%

Disadvantages of Consumer Direction:

• Lack of Oversight and quality assurance 51%
• Fraud and abuse 32%
• Program implementation difficulties 27%
• Consumer management difficulties 18%

Responses on the advantages and disadvantages of consumer direction vary in several different ways by administrative categories. First, while only 12% of all administrators mentioned that consumer direction could increase the pool of providers and range of choices, twice as many MR/DD administrators (24%) list this as an advantage. Second, aging administrators are the most likely to report that the consumer-directed approach is too difficult for consumers to manage (23%). Third, while few total respondents (8%) identify resistance to system change from the state legislature, the public, and/or providers as a barrier, 18% of the MR/DD administrators mention it. Finally, aging and MA administrators appear to be more concerned than MR/DD and VR agencies about quality issues in consumer-directed services. More than half of aging (54%) and MA (53%) respondents report lack of oversight and quality assurance as a disadvantage, while fewer VR (36%) and MR/DD administrators (32%) mention it.

2. Attitudes of State Administrators: The Perspective of the Agency/For-Profit Provider

State administrators were asked their opinions on how formal agency providers (those who provide services on a for-profit basis) perceive consumer direction. Restated, they were asked to list the advantages and disadvantages of consumer-directed services in traditional long-term service programs from the perspective of agency providers.

According to state administrators, the major advantages of consumer-direction for agency providers are that these types of programs can reduce administrative burdens and costs, tailor services to consumer needs and preferences, improve customer satisfaction, and enhance the relationship between provider and consumer.

Potential disadvantages of consumer-directed services for agency providers, as reported by state administrators, are that these services would increase competition, create liability issues due to the lack of oversight, pose difficulties in meeting individualized schedules, and result in some loss of control over service provision.

As shown in Table 7, about one-third of state administrators stated that the biggest advantage of consumer direction is that itsí potential to reduce the administrative burdens and costs associated with traditional programs. However, an almost equal number of administrators believe that a switch to consumer direction could be perceived as a disadvantage for providers. Specifically, they express concerns about being forced to operate in a new and more competitive business environment. Therefore, they acknowledge that consumer direction could dramatically alter the current dynamics of long-term care service delivery (Table 7).

Advantages of Consumer Direction:

• Reduces administrative burden and cost 30%
• Services tailored to consumer needs and preferences 26%
• Improves consumer satisfaction 16%
• Enhances relationships between providers and consumers 18%

Disadvantages of Consumer Direction:

• Increased competition and potential loss of business 26%
• Liability issues (lack of oversight and quality assurance) 22%
• Difficulties in meeting individualized schedules 17%
• Loss of control over service provision 13%

3. Attitudes of State Administrators: The Perspective of the Independent/For-Profit Provider

State administrators were asked their opinion on how consumer direction affects independent for-profit providers. These types of providers administer long-term care services on a for-profit basis but are not associated with a formal long-term care agency.

A third of the state administrators indicated that consumer direction might be seen as a way for independent providers to expand their share of the long-term care market. However, there is little consensus among administrators on the disadvantages for independent providers. The most commonly cited disadvantages seem to deal with training and support issues (Table 8).

Advantages of Consumer Direction:

• Increased business and work opportunities 33%
• Improves work flexibility 23%
• More direct contact and accountability with consumers 22%
• More cost effective 15%

Disadvantages of Consumer Direction:

• No agency/intermediary support or back-up 11%
• Lack of formal training 10%
• Low wages and no benefits 10%
• Contractual and employment related tax issues 10%

4. Attitudes of State Administrators: The Perspective of the Informal Caregiver

A third group that state administrators were asked to comment on is informal caregivers. Informal caregivers are not paid providers and tend to be friends and family members of consumers. For informal caregivers, the main advantage of a consumer-directed program is the possibility of receiving compensation for the time and effort involved in providing care to the consumer with whom they are associated (28%). It is important to note that under traditional programs informal caregivers do not usually receive financial benefits for their work, even though it can amount to a significant investment of time.

Another set of advantages relates to the expansion of flexibility and choice available to caregivers and consumers. Both questions dealing with these issues garnered a 24% response rate. State administrators also recognize that with an increased role for informal caregivers in a consumerís care, comes increased responsibility. More than one-fourth of respondents seem to feel that the possible expansion of both responsibilities and tasks under a consumer-directed program is a disadvantage for informal caregivers.

Advantages of Consumer Direction:

• Compensation for service provided 28%
• Enhances flexibility/responsiveness to consumer and caregiver need 24%
• Increases choice of services and providers 24%
• Enhances caregiving role 13%

Disadvantages of Consumer Direction:

• More responsibility and tasks for caregivers 27%
• Lack of formal training 18%
• Potential to create family conflicts 14%
• Fraud and abuse 14%

5. Attitudes of State Administrators: The Perspective of the Consumer

The last group that state administrators were asked to discuss is the consumers of the long-term services. A clear majority of state administrators believe that the main advantage of consumer-directed care is that consumersí control over services would be enhanced dramatically (66%). Moreover, respondents mention increased choice and flexibility as distinct advantages (30% and 26% respectively). A major drawback to consumer-direction, according to 44% of the administrators, is that consumers may have trouble managing the different aspects of service delivery. Finally, 25% of the respondents maintain that increased quality assurance could be an additional area of concern.

Advantages of Consumer Direction:

• Enhances control over services 66%
• Increase choices 30%
• Enhances flexibility and responsiveness to needs 26%
• Increases independence 20%

Disadvantages of Consumer Direction

• Difficulties in managing a consumer directed benefit 44%
• Lack of oversight and quality assurance 25%
• Fraud and abuse 18%
• Lack of information on community resources 13%

6. Differences in the Attitudes of State Administrators

The final area of analysis for this section of the report explores the differences in attitudes between administrators whose programs contain elements of consumer direction and those with programs that do not.

Over a third (37%) of those administrators whose states have consumer-directed programs said that increased cost effectiveness is an advantage, while less than a quarter of those not offering these types of programs (24%) agreed. Nearly one third (32%) of administrators with consumer-directed programs believe that implementation issues are a disadvantage, while only 19% of those not offering these programs cite this as a disadvantage.

Administrators who do not operate consumer-directed programs are more than twice as likely (27% vs. 13%) to believe that enhancing the relationship between agency/for profit providers and consumers is a positive aspect. It is interesting to note that administrators with consumer-directed programs are 5 times more likely (19% vs. 4%) to report that loss of control over the provision of services is not a disadvantage.

Administrators who run programs without consumer-directed elements tend to argue that informal caregivers would benefit from consumer direction because they would begin to receive payment for services provided (34% vs. 25%). However, they are more likely to be concerned about the lack of training and screening of informal providers (28% vs. 12%) than their counterparts.

IV. DISCUSSION

The 1996 survey reveals that knowledge of both consumer direction and cash and counseling issues is high among state administrators. Among all four categories of administrators there is a strong interest in increasing these approaches to long-term service delivery. Interest is also significant among those both currently involved with administering consumer-directed programs, as well as among those who are not.

While administratorsí knowledge of, and interest in, consumer direction is high, the programs and practices they reported on vary considerably. Indeed, there appears to be a great deal of diversity in consumer-directed programs.⁸

In general, MR/DD programs appear to be more progressive than the other agencies with regard to knowledge, practice and attitudes surrounding consumer direction. Vocational Rehabilitation and Aging programs seem to be the least advanced, with MA falling between these extremes.

A. MR/DD Program Responses

One explanation for the prevalence of consumer-directed programs among the MR/DD groups is that it reflects the success of MR/DD advocates in advancing the concept and implementation of these services. Consequently, MR/DD administrators appear to have more experience with consumer direction; and their knowledge, attitudes, and interest demonstrate this. For example, one basic tenet of consumer direction is choice of providers. Survey responses indicated that MR/DD services offer the greatest variety of provider modes and rank the highest with regard to the utilization of individual providers, friends/neighbors, and relatives.

Additionally, a high rate of positive responses to specific program questions throughout the survey by MR/DD administrators appears to be further evidence of the philosophy and programmatic elements of consumer direction. MR/DD programs offer the greatest number of reimbursement options such as vouchers and direct payment to providers by consumers. MR/DD programs are also more likely than others to offer information and/or counseling on service options, another critical component in making informed choices and managing services by consumers and/or their representatives.

B. Aging and Vocational Rehabilitation Programs

The responses from Aging and VR program administrators indicate a level of restraint with regard to consumer direction. For example, aging programs score the highest in terms of using agency providers and they tend to rely heavily on traditional case/care management to assure quality. Few aging programs use consumer training to assure quality, another important feature of consumer-direction.⁹ Moreover, aging administrators are the most likely to argue that such an approach might be too difficult for consumers. However, aging administrators appear to be cognizant of the changing nature of long-term service environments in that they acknowledge the need for technical assistance in developing consumer-directed programs.

The responses from VR state administrators are less clear. Vocational Rehabilitation programs are dedicated to helping persons with disabilities gain independence. These programs emphasize education and training for both life and workplace skills therefore, it is not surprising that VR survey respondents score high on training-related issues. However, VR administrators rate lower than their counterparts in their responses to both broad and specific questions about consumer direction. For example, VR programs are the least likely to be interested in advancing consumer direction and are the least likely to use vouchers as an alternate mode of reimbursement.

C. Medical Assistance/Medicaid Programs

Medical Assistance administrators have the widest range of responses. This could be due to the conflicting pressures of program administrators. On the one hand, MA programs, which typically represent a large portion of state revenues, are under pressure to control costs while serving a large and diverse population. MA administrators may be familiar with consumer direction, and even have some experience with programs, but are hesitant to implement them. This hesitation could be due to the fact that Medical Assistance programs operate under federal Medicaid laws, rules and regulations, which can be burdensome and complicated. The need for federal waivers for some programs presents a serious impediment to the development and implementation of consumer-directed approaches to services even with the possibility of cost savings and increased consumer satisfaction.

D. External Perspectives as Offered by State Administrators

As demonstrated by the survey, administrators believe that there are differences in the way other stakeholders (i.e., formal agency providers, independent providers, informal caregivers and consumers) are likely to view consumer direction. If state administrators are accurate in their assessments, the survey findings demonstrate the challenges of formulating a unified message in communication campaigns aimed at advancing these approaches. The advantages and disadvantages identified most frequently such as cost effectiveness, consumer satisfaction, oversight, quality assurance, and fraud and abuse, may provide some common ground for bringing diverse groups together to promote consumer direction. Moreover, these findings assume a degree of significance due to the fact that little evidence is available to compare the effectiveness of consumer-directed approaches to traditional approaches. The surveyís findings (such as perceived advantages of consumer direction on enhancing consumer empowerment, autonomy, and independence, as well as cost effectiveness) may be of particular interest to an array of groups looking to introduce consumer direction into state government programs. Comparing the responses of administrators who offer consumer-directed programs to those who do not could assist advocates in better understanding preconceived notions versus those gained by experience. The surveyís findings can assist policymakers and administrators in planning new programs, and can be used to help inform various stakeholders who are advocating for these types of programs.

Likewise, responses about technical assistance (discussed in the next section) reveal the need for training materials, policy analysis, and evaluation. This information will aid others in developing strategies to address some of the practical issues of implementing consumer direction.

E. Technical Assistance Needs

Consumer direction is a relatively new approach to service delivery in the United States, thus, the availability of technical assistance is an important variable that could affect an agencyís ability to implement them.

Administrators clearly indicate a need for technical assistance in advancing consumer direction within their departments (Table 11). Aging administrators are the most likely to state that technical assistance needs are a priority (91%), closely followed by MR/DD administrators (90%). The perceived need for technical assistance is somewhat less for VR administrators (76%) who also express the least interest in consumer direction. These numbers reflect the general pattern of responses throughout the survey with regard to the four department categories.

As a group, aging administrators have the highest percentage of respondents seeking policy options analysis (51%), best practices/demonstration projects (31%), and outcome/program evaluations (15%). Vocational Rehabilitation and MR/DD administrators list their major needs as training of providers, caregivers, and consumers (71%). MR/DD administrators are also more likely than the others to express a need for assistance with quality assurance standards and practices (21%), tax, legal, and liability issues (14%).

There are some differences between programs with consumer-directed elements and those without. One third of agency administrators not currently offering these services are more interested in examples of best practices or demonstration projects, compared to only 18% of those already operating consumer-directed programs. Also, those involved with consumer-directed services are much more interested in quality assurance and tax, legal and liability issues (17% and 12% respectively) than those not offering these kinds of approaches (6% and 2%respectively).

Table 11. Percentage of Technical Assistance Priorities

• Training of providers, caregivers, and/or consumers 67%
• Policy options analysis 38%
• Examples of best practices/demonstration projects 24%
• Quality assurance standards/practices 13%
• Tax/legal/liability issues 8%
• Outcomes/program evaluations 8%

V. CONCLUSION

As the U.S. policymakers continues to review issues surrounding the management of long-term services, the focus of discussion is shifting towards new models of care and services that include consumer direction. Many consumers of such services have been active participants in managing their health care needs while others have not enjoyed such opportunities. The key question facing policy makers, researchers and advocates is: where do we go from here? A systematic understanding of consumer-direction and cash and counseling is one important step in the larger process of exploring consumer rights, while maintaining a vision of cost-effective long-term services.

A. Summary

Survey responses demonstrate that a high level of support for consumer direction exists among administrators of four long-term care state service agencies in the United States and its territories. Of the 146 administrators who responded, 110 stated that they are aware of the concept of consumer direction in home and community-based services. Seventy-one percent of the respondents express an interest in advancing consumer-directed programs for persons with disabilities and older adults who are the beneficiaries of such programs. MR/DD administrators express the most enthusiasm (77%), while VR administrators express the least degree of interest (63%). Few administrators (4%) indicated a complete lack of interest in advancing these programs. None of the MR/DD respondents reported a total lack of interest within their departments for advancing consumer direction while 7% of the VR administrator respondents said that there was no interest in their departments.

Most administrators whose departments maintain consumer-directed programs stated that there was interest in expanding consumer direction within their departments (83%). A slight majority (51%) of administrators whose programs do not contain elements of consumer direction expressed an interest in implementing some aspects of consumer direction. Among those programs that do not employ consumer direction, 40% of the administrators responded that staff in their departments could be classified as "undecided" about developing such services.

Finally, the survey found that there is a significant need within state governments for technical assistance. In particular, state administrators stated that they would need help in designing payment and reimbursement mechanisms. Quality assurance issues are also of significant concern.

B. Limitations

One of the limitations of this survey is that the programs are self-identified as consumer-directed, and no attempt was made to use any standard criteria to verify if these programs adhere to the definition of consumer direction developed by the Institute on Consumer-Directed and Long-Term Care Services. Future verification of the extent of consumer direction in state programs through site visits and/or key stakeholder interviews will allow for a more accurate assessment of the current state of the consumer direction movement in the United States.

Second, though they did their best to reveal the advantages and disadvantages from the perspectives of other stakeholders, only administrators were surveyed. Indeed, surveying formal agency providers, independent providers, informal caregivers, and consumers would have yielded much more accurate information on these attitudes. An analysis of respondentsí own views on consumer direction compared to the predictions of state administrators would provide invaluable information for policymakers and advocates.

Finally, since the surveyís completion in the fall of 1996, there has been increasing attention on consumer direction. This survey is intended to be a benchmark upon which to compare the results of subsequent surveys.

C. Future of Consumer Direction and the Second Survey

As the need for long-term services continues to grow in the United States, health professionals, state administrators, and policy makers are looking for new and better approaches to providing services. The responses from this survey indicate that many state administrators believe the advantages of consumer-directed care for long-term user, outweigh the disadvantages. The responses also show the need for a better understanding of consumer direction in general, and cash and counseling in particular. Currently, in the U.S., there is little information from which to compare the effectiveness of these approaches to traditional approaches. This survey, and the follow-up survey currently being conducted by NCOA and funded by the National Institute for Disability and Rehabilitation Research (NIDRR), will help close this gap.¹⁰

A second survey is currently being conducted by NCOA with the same pilot and follow-up survey group and is scheduled to be completed in the Spring of 1999. This survey seeks to explore attitudes towards consumer-direction programs and cash and counseling in more depth. One of itsí major goals is to uncover the kinds of concerns participants have regarding consumer-directed programs. It will also examine the existence of various barriers to implementing such programs. Finally, the survey will be part of a larger, on-going dialogue with participants on how to resolve some of these barriers. Identifying and analyzing different kinds of barriers whether on a federal, state or local level could contribute much needed information on why and how these barriers exist and what changes are needed to increase consumer-directed services.

NCOA continues to work on consumer direction, as well as provide technical assistance to such programs in a variety of states. NCOA is a key consultant on the Cash and Counseling Demonstration and Evaluation Project, which is based at the University of Maryland Center in the Aging and funded by the Robert Wood Johnson Foundation (RWJF) and the U.S. Department of Health and Human Services. In addition, NCOA runs the RWJF-funded Independent Choices Program, which operated 13 grants all working on consumer-direction issues. NCOAís National Institute on Consumer- Directed Long-Term Services (NICDLTS) is looking forward to working with the many states that express an interest in advancing consumer direction and program models, as well as continuing to conduct research and analysis in this critical area.

 APPENDIX: 1996 survey instrument

Survey of State Administrators on

CSAVR Research Number 9749-RES/APP-A

NAME OF PERSON SURVEY WAS MAILED TO: _________________________________

information on person filling out survey:

NAME: ______________________________________________________________________

POSITION & TITLE: ___________________________________________________________

DEPARTMENT: _______________________________________________________________

MAILING ADDRESS: __________________________________________________________

__________________________________________________________________________

__________________________________________________________________________

TELEPHONE NUMBER: ________________________________________________________

FAX NUMBER: _______________________________________________________________

E-MAIL ADDRESS (if available): ________________________________________________

All data generated from this survey are strictly confidential. Reports on the findings will be presented in the aggregate. However, in some instances, The National Council on the Aging, Inc. (NCOA) would like to identify and report on programs to those working within the field of consumer-directed services and to other interested parties. Do you consent to NCOA's making specific references to your programs in published reports? If yes, please sign and date below.

_____ Yes _____ No. I prefer to be called for permission before a specific reference is made.

Signature: ______________________________________ Date: __________________________

1. Were you aware of the concept of consumer-direction in home and community-based services (as described in the enclosed materials) before you received this survey?

_____ Yes _____ No

2. Were you aware of the concept of cash and counseling (as described in the enclosed materials) before you received this survey?

_____ Yes _____ No

3. If yes to above, how did you become aware of these concepts? (Please check and indicate reference if known.)

_____ (a) Literature and/or project reports: ________________________________________________

_____ (b) Professional membership associations: ___________________________________________

_____ (c) Conference/seminars: _________________________________________________________

_____ (d) Popular press/media: __________________________________________________________

_____ (e) Request for proposals (RFP) for Cash-and-Counseling Demonstration and Evaluation Project of The Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services

_____ (f) Consumer Choice News, the newsletter of the National Institute on Consumer-Directed Home and Community-Based Care Systems

_____ (g) Other: _____________________________________________________________________

_______________________________________________________________________________

4. Does your department or do other departments offer consumer-directed home and community-based services?

_____ Yes _____ No

5. If yes, is it a cash-and-counseling program?

_____ Yes _____ No

 ALL OTHERS SHOULD GO TO PAGE 9 AND CONTINUE WITH QUESTIONS 23-29.

PROGRAM DESCRIPTION

6. What program in your department provides consumer-directed home and community-based services? (Please describe this program below. If there are additional consumer-directed programs, you may wish to make copies of pages 3-8 and describe your other programs.)

(a) What is the program name? _________________________________________________________

____________________________________________________________________________________

(b) What department or unit administers this program? ______________________________________

____________________________________________________________________________________

____________________________________________________________________________________

(c) What are the program goals and objectives? ____________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

___________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

7. What was the start date for program (mm/yy)? __ __ / 19__ __

8. What is the end date for program, if time-limited (mm/yy)? __ __ / 19__ __

9. Have any substantial program changes been planned for?

_____ Yes _____ No

If yes, please explain: _________________________________________________________________

____________________________________________________________________________________

__________________________________________________________________________________

FUNDING AND COSTS

11. How is program currently funded? (Please check all funding sources for program.)

FEDERAL FUNDS

_____ (a) Title XIX Medicaid Personal Care (PC) Option

_____ (b) Title XIX Medicaid 1915(c) Home and Community-Based Care Waiver

_____ (c) Other Medicaid waiver (Please specify type of waiver below.)

_____ (d) Title XIX Community-Supported Living Arrangement

_____ (e) Title XX Social Services Block Grant

_____ (f) Title III Older Americans Act

_____ (g) Rehabilitation Act

STATE AND LOCAL PUBLIC FUNDS

_____ (h) State funds

_____ (i) County/municipal funds

_____ (j) Tribal funds

OTHER FUNDS

_____ (k) Foundation grants

_____ (l) Client contributions/share of costs

_____ (m) Other funding (Please describe.) ________________________________________________

____________________________________________________________________________________

12. What are the approximate program costs?

$ _ _ , _ _ _ , 0 0 0 (a) Fiscal year 1994 expenditures or most recent year figures available

$ _ _ , _ _ _ , 0 0 0 (b) Fiscal year 1995 budget

$ _ _ , _ _ _ , 0 0 0 (c) Fiscal year 1996 budget

Comments: __________________________________________________________________________

____________________________________________________________________________________

ELIGIBILITY

13. Categorical eligibility: Which specific age and disability groups are eligible for this program?

____________________________________________________________________________________

____________________________________________________________________________________

14. Functional eligibility: What criteria are used to determine eligibility? (Please check all that apply.)

_____ (a) Limitations in activities of daily living (ADLs)

_____ (b) Limitations in instrumental activities of daily living (IADLs)

_____ (c) Limitations in mental status

Please describe other criteria that determine eligibility: _____________________________________

____________________________________________________________________________________

____________________________________________________________________________________

15. Financial eligibility: What are the specific income and/or asset criteria for program eligibility?

____________________________________________________________________________________

____________________________________________________________________________________

TYPES OF SERVICES

16. Range of services provided: What services does your program provide to the consumer? (Please check all that apply.)

_____ (b) Homemaker and/or chore service (housecleaning, laundry, shopping, transportation, errands, etc.)

_____ (c) Paramedical services (assisting consumer with oral medications, range of motion, catheter care, etc.)

_____ (d) Skilled care provided by a licensed professional - LVN, LPN, or RN (IV medication administration, wound care, etc.)

_____ (e) Rehabilitation therapies by physical therapy, occupational therapy, speech therapy (speech therapy for persons who have suffered a stroke or physical therapy for persons who have sustained a hip fracture, etc.)

_____ (f) Other services: (Please describe.) ______________________________________________

____________________________________________________________________________________

17. Service provider modes: Who may provide services in this program? (Please check all that apply.)

_____ (b) Individual providers (not a relative or friend)

_____ (c) Friends or neighbors

_____ (d) Relatives

_____ (i) Spouses

_____ (ii) Parents

_____ (iii) Adult children

_____ (iv) Adult siblings

_____ Other: (Please describe.) ________________________________________________

Comments: __________________________________________________________________________

____________________________________________________________________________________

PROGRAM BENEFITS

(a) Minimum amount $ _ , _ _ _ and/or _ _ _ hours

(b) Maximum amount $ _ , _ _ _ and/or _ _ _ hours

(c) Average amount $ _ , _ _ _ and/or _ _ _ hours

Comments: __________________________________________________________________________

____________________________________________________________________________________

19. How are providers (professional or informal) reimbursed in this program? (Please check all that apply and describe.)

_____ (a) Direct provider reimbursements after provision of services: __________________________

__________________________________________________________________________

_____ (b) Voucher payment system: _____________________________________________________

__________________________________________________________________________

_____ (c) Consumer pays provider directly:________________________________________________

__________________________________________________________________________

_____ (d) Other method, please describe: _________________________________________________

__________________________________________________________________________

CONSUMER DIRECTION AND CHOICE

20. What specific program features address consumer direction, choice, and independent living? (Please check all that apply and describe.)

_____ (a) Choice of provider (professional or informal): _____________________________________

__________________________________________________________________________

__________________________________________________________________________

_____ (b) Choice of services: ___________________________________________________________

__________________________________________________________________________

__________________________________________________________________________

_____ (c) Control over schedule: ________________________________________________________

__________________________________________________________________________

__________________________________________________________________________

_____ (d) Information and/or counseling about service options for consumers: ___________________

__________________________________________________________________________

__________________________________________________________________________

_____ (d) Other: (Please describe.) ______________________________________________________

__________________________________________________________________________

__________________________________________________________________________

1. What is the nature of the information and/or counseling services, if services are available to consumers? (Please answer the following questions.)

(a) What is the focus of information and/or counseling (i.e. types of information available)?___

_______________________________________________________________________________

(b) Who provides it? _____________________________________________________________

_______________________________________________________________________________

(c) How often or when is it available (e.g. at prescribed intervals, as needed, ongoing)? ______

_______________________________________________________________________________

(d) Is counseling mandatory or optional? ____________________________________________

_______________________________________________________________________________

QUALITY ASSURANCE

22. Quality Assurance: What program features are designed to assure that consumers' support needs are met? (Please check all that apply and describe.)

_____ (a) Ongoing monitoring through traditional case or care management: ____________________

__________________________________________________________________________

__________________________________________________________________________

_____ (b) Consumer training for quality assurance: _________________________________________

__________________________________________________________________________

__________________________________________________________________________

_____ (c) Program evaluations: _________________________________________________________

_________________________________________________________________________

_________________________________________________________________________

_____ (d) Assessment of consumer satisfaction with service (e.g. consumer satisfaction surveys):

_________________________________________________________________________

__________________________________________________________________________

_____ (e) Mandatory or optional training of informal caregiver/individual provider:

__________________________________________________________________________

__________________________________________________________________________

Other features that provide quality assurance and additional comments: _________________________

____________________________________________________________________________________

____________________________________________________________________________________

(a) Advantages: ______________________________________________________________________

_______________________________________________________________________________

(b) Disadvantages: ____________________________________________________________________

_______________________________________________________________________________

24. In your opinion, what are the advantages and disadvantages -- from the perspective of agency providers (e.g. home health care agencies) -- of consumer-directed home and community-based services over traditional long-term care programs?

(a) Advantages: ______________________________________________________________________

_______________________________________________________________________________

(b) Disadvantages: ____________________________________________________________________

_______________________________________________________________________________

25. In your opinion, what are the advantages and disadvantages -- from the perspective of independent providers (non-agency providers) -- of consumer-directed home and community-based services over traditional long-term care programs?

(a) Advantages: ______________________________________________________________________

_______________________________________________________________________________

(b) Disadvantages: ____________________________________________________________________

_______________________________________________________________________________

26. In your opinion, what are the advantages and disadvantages -- from the perspective of informal caregivers (e.g. friends and relatives) -- of consumer-directed home and community-based services over traditional long-term care programs?

(a) Advantages: ______________________________________________________________________

_______________________________________________________________________________

(b) Disadvantages: ____________________________________________________________________

_______________________________________________________________________________

27. In your opinion, what are the advantages and disadvantages -- from the perspective of consumers -- of consumer-directed home and community-based services over traditional long-term care programs?

(a)Advantages:________________________________________________________________

_____________________________________________________________________________

(b) Disadvantages:_____________________________________________________________

________________________________________________________________________

28. Is there interest in your department in further advancing (e.g. establishing or improving upon) consumer-directed home and community-based services for persons with disabilities and older people?

_____ Yes _____ No _____ Undecided

29. If your department were to adopt or improve upon existing consumer-directed home and community-based services, what technical assistance would be of most use to you (e.g. training materials for consumers and/or workers, policy options analysis, etc.)?

____________________________________________________________________________

____________________________________________________________________________

____________________________________________________________________________

______ Yes _______ No

PLEASE COMPLETE AND RETURN IN THE
ENCLOSED ENVELOPE BY AUGUST 16, 1996 TO: