Consumer Direction in Disability Policy Formulation and Rehabilitation Service Delivery.
Consumer direction can exist in differing degrees and may span many types of services. It ranges from the individual independently making all decisions and managing services directly to the individual using a representative to manage services (Kosciulek, 1997). The unifying theme in CD is that individuals with disabilities have the authority to make choices that work best for them, regardless of the nature or extent of their disability or the source of payment for services (NICDLTS, 1996a). Consumer choice and control are both prerequisites for an effective consumer-directed rehabilitation service delivery system (Dart, 1992; West & Parent, 1992).
Currently in American society, people with disabilities, as a group, remain poorer, less educated, and less employed than the population in general (Kosciulek, 1998; National Council on Disability, 1996). Higgins (1992) asserted that the problems faced by people with disabilities can be viewed as the consequences of the failure of social institutions that have been constructed to deal with a narrower range of variation than is in fact present in the disability population. Likewise, Szymanski and Trueba (1994) emphasized that at least some of the difficulties faced by people with disabilities are not the result of functional impairments related to the disability, but rather are the result of discriminatory processes embedded in societal institutions for rehabilitation and education and enforced by well-meaning professionals. Those individuals whose mobility, communication, medical needs, or cognition differs from social norms find themselves confronting institutions not well suited to meet their abilities and potential (Scotch & Schriner, 1997).
Given the current status of people with disabilities in American society, the purpose of public disability policy and rehabilitation service delivery must be to enhance the quality of life of people with disabilities. Empowering people with disabilities to have control over the policies and practices that directly affect their lives can achieve this important objective. People with disabilities must play the central role in directing the disability policy formulation and rehabilitation service delivery that is central to their empowerment.
Underlying Assumptions of Consumer Direction
Three underlying assumptions of CD are presented to set the framework for a more specific discussion of the conceptual framework of CD.
Consumer-directed disability policy and rehabilitation programming should be based on the presumption that consumers with disabilities are the experts on their service needs. An informed consumer is the best authority on what his or her service needs are, how these needs are best met, and whether these needs are being met appropriately. The consumer should be presumed competent to direct services and make choices, regardless of age, or the nature or extent of disability (NICDLTS, 1996a).
Choice and control can be introduced into all service delivery environments. Systems can be designed to include a variety of options that cater to diverse groups of consumers, whether they wish to exert total control over services or very little control. The model of disability as human variation (Scotch & Schriner, 1997) considers disability as introducing complexity and disequilibrium into service systems. By focusing attention on how systems respond to the variation introduced by disability, a consumer-directed model of service delivery might help policy makers and program administrators address the issue of how to best design rehabilitation systems to enhance consumer control. The range of preferences expressed by consumers provides the structure for expanding CD within a variety of service delivery environments (NICDLTS, 1996a). For example, a variety of accommodation and compensation techniques (e.g., memory notebook, visual or auditory cues) may be implemented during medical rehabilitation to promote choice and control for an individual with residual cognitive deficits following a brain injury.
Consumer direction should be available to all, regardless of payer. People with disabilities who rely on services financed by public agencies or insurance companies have limited control over the services they receive. Inability to control the form of assistance received is severely dehumanizing (Hahn, 1991), particularly when the payer control extends to issues concerning day-to-day existence, such as eating times and living and working environments. Disability, whether mental, physical, sensory, or age-related, when combined with reliance on public assistance, should not provide a rationale for others to make decisions about important aspects of persons' lives (Kosciulek, 1997; NICDLTS, 1996a).
Conceptual Framework of Consumer Direction
The conceptual framework of CD is depicted in Figure 1. As illustrated in this figure, the construct of CD comprises the following four components:
The ability of consumers with disabilities to control and direct the delivery of services. This component relates to the amount of control consumers have over how, when, and by whom services are delivered. It also focuses on the extent to which individuals with disabilities determine the type and influence the quality of services received (Kosciulek, 1997; NICDLTS, 1996a).
The variety and type of service delivery options available to consumers with disabilities. The second component of CD relates to the issue of whether consumers have a choice from a range of viable rehabilitation service options. For example, in both employment and community living, consumers with developmental disabilities have not been given a range of service options. Traditionally, the range has been from a single option to a few constricted options (Taylor, Biklen, & Knoll, 1989; West & Parent, 1992). Limitations, risks, or restrictions to consumer control are also considered by this component. For example, if a consumer with a disability attempts to assert control over his or her rehabilitation program by designing and proposing an alternate service type not previously provided, do funding and program rules and regulations prohibit such an option?
The availability of appropriate information and support. Consumers with disabilities and their families consistently record two chief criticisms of the current rehabilitation service system: (a) a lack of information and (b) a lack of long-term supports (Holmes, 1993; Kosciulek, 1995). Thus, the crux of the third component of CD is whether information and support are available that enable consumers to take advantage of rehabilitation services (NICDLTS, 1996a). In a consumer-directed system, consumers are informed about the service options available and the personal, legal, and financial issues associated with each option.
The ability of consumers to participate in systems design and service allocation. Disability policy development continues to take place in large part without the participation and involvement of people with disabilities (Hagner & Marrone, 1995; National Council on Disability, 1996). The fourth component of CD centers on the level and quality of participation that consumers have at the policy making level; for example, in policy formulation, design of rehabilitation services, and allocation of financial resources (NICDLTS, 1996a). An example of a current effort to increase consumer involvement and control in policy making is the 1992 Rehabilitation Act Amendment regulation that each state vocational rehabilitation (VR) agency implement a State Rehabilitation Advisory Council which includes individuals with disabilities.
The four components of CD merge to form a system that is directed by people with disabilities to meet their needs. One implication of this conceptual framework is that information about all of the components must be collected to develop a complete picture of CD. Collecting information on only one component or a couple of components results in an incomplete picture. All four components must be measured to capture CD.
Measurement of CD, however, is problematic. First, CD is an open-ended construct. As recommended by Zimmerman (1995), the assessment of open-ended constructs such as CD must include measures that are appropriate for the population and context under study. Open-ended constructs may not be fully captured by any one specific operationalization. For example, observational terms may take on different forms in different populations, contexts, and time. Second, the open-ended nature of many disability and rehabilitation constructs implies that the facts and rules used to represent a construct may change over time, depending upon the context in which it is measured. For example, a measure of CD in the operation of a group home for individuals with developmental disabilities would differ from a measure of CD in the medical rehabilitation process following a traumatic brain injury. Consequently, the development of universal and global measures of CD is not an appropriate goal because it is theoretically inconsistent with the construct given the specific demands and characteristics of different public policies, service delivery institutions, and life situations of people with disabilities.
Consumer direction, therefore, may be considered an open-ended construct because it depends upon context, population, and developmental period. The measurement of CD may be especially difficult because (a) CD manifests itself in different perceptions, skills, and behaviors across people; (b) CD may require different actions and skills for its attainment in various settings; and (c) CD may fluctuate over time. Each of these qualities suggests that the construct of CD cannot be easily reduced to a universal set of operational rules and definitions. As a result, the development of context and population-specific measures of CD will be challenging. However, given the significantly limited and often diminishing resources of money, personnel, and programs, relevant measures of CD may further the development of consumer-driven disability policy and rehabilitation services to maximize such resources. More specifically, standardized quantitative and open-ended qualitative measures of CD would provide data for assessing the magnitude and quality of CD in various programs and settings (e.g., choice of vocational goal, consumer satisfaction with services), for observing how CD changes over time, and for evaluating the efficacy of policies and programs designed to improve the quality of life of people with disabilities (Kosciulek, in press).
Further development of the construct and theory connected to CD should examine how the control, service variation, information and support, and policy making components interact to form CD. Questions include: (a) How do these four components relate to one another?; (b) Are some components of CD contingent upon others?; (c) What is the link between the components and crucial disability policy and rehabilitation process outcomes of community integration, empowerment, and quality of life?; and (d) Who will be in control of services and financial resources in a more consumer-directed rehabilitation system? It is noteworthy that the conceptual framework presented refers to both the individual and organizational levels of analysis. Consumer-directed outcomes in disability policy formulation and rehabilitation service delivery require both quantitative and qualitative individual and organizational levels of measurement.
The measurement of CD in a specific setting for a particular sample of individuals (e.g., consumers of state-federal VR services, patients in a medical rehabilitation program, a residential program for individuals with developmental disabilities) is possible, but it "must be connected to the experience of the research participants as they state it, and contextually grounded in their life experiences" (Zimmerman, 1995, p. 598). As indicated by Zimmerman (1995), this approach necessarily limits generalizability to other persons or contexts, but this trade-off may have to be accepted in order to adequately and appropriately measure CD. All research efforts must inevitably make trade-offs between the competing demands of internal and external validity (Szymanski & Parker, 1992; McGrath, 1982). Research on CD is not unique in this regard, as the development of the theoretical and applied aspects of any construct requires programmatic research that builds a body of knowledge (McGrath, 1982; Zimmerman 1995).
Examples of Consumer Direction
Five examples are presented to illustrate how the principle of CD and components of the conceptual framework of CD may be infused into disability policy making and rehabilitation services. The first four examples focus on systems-level CD. Infusing CD in systems is vital as organizational constraints are frequently identified as major barriers that impede meaningful, active consumer involvement in policy making and service delivery (Chan, Shaw, McMahon, Koch, & Strauser, 1997). The last example focuses on individual-level CD. The examples discussed include: (a) voucher systems; (b) the Michigan Rehabilitation Renaissance Project; (c) consumer-directed mental health services; (d) participatory action research; and (e) counselor-consumer relationships.
Trends in VR have stressed the need for increasing both consumer involvement and participation and the quality of services provided (Kosciulek, Vessell, Rosenthal, Accardo, & Merz, 1997; Seelman & Sweeney, 1995; Thomas & Strauser, 1995). A voucher system in rehabilitation would empower consumers to decide which services they wished to purchase and whether they wanted to receive these services from a public or private agency. By encouraging competition between agencies and promoting accountability, the implementation of a voucher system may also improve the efficiency and effectiveness of the rehabilitation delivery system (Thomas & Strauser, 1995). Consistent with the CD concept, the major advantage of implementing a voucher system would be to increase consumer choice. In addition, a voucher system would appear to be a "viable means of reforming the current state-federal VR system and empowering clients so that they can receive the maximum benefit from rehabilitation services" (Thomas & Strauser, 1995, p. 18).
The Michigan Rehabilitation Renaissance Project
The Michigan Rehabilitation Services and United Cerebral Palsy Association of Detroit developed a joint program, the Rehabilitation Renaissance Project, intended to transfer control and authority in the VR process to consumers with disabilities through empowerment training and person-centered planning (Callahan & Skiba, 1997). The project was designed intentionally to address the following criticisms of the VR process: (a) consumers with disabilities are not empowered; (b) consumers do not have a true choice in their rehabilitation plans; (c) the professional brings all the answers to the rehabilitation equation; and (d) the professional is responsible for whatever happens to the consumer. Embracing the CD concept, the project has as its primary values and practices: (a) consumer choice, empowerment, and responsibility; (b) a focus on consumer strengths; and (c) consumer "expertise" on her or his rehabilitation needs. Project outcomes, as compared to the traditional VR process, suggest increased efficiency in service delivery and more positive employment outcomes for consumers with disabilities (Callahan & Skiba, 1997). A lesson learned from this project was that both service providers and consumers with disabilities benefited from increased consumer involvement in the VR process.
Consumer-Directed Mental Health Services
Harp (1994) and Campbell (1991) have written papers on the consumer movement among people with psychiatric disabilities from consumer and provider viewpoints, respectively. Their propositions embody the philosophy and application of CD. Harp (1994) defined empowerment of people with disabilities as possessing the same degree of control over one's life as is generally possessed by people without disabilities. The author asserted that, in order to attain empowerment, mental health consumers must be involved at every level of the planning, implementation, and ongoing operation of VR services. Harp (1994) hypothesized that, in a consumer-directed model, benefits accrued to both consumers and service providers. Mental health consumers would make progress and have positive outcomes, while programs would develop positive track records for ensuring future funding and referrals. Harp (1994) thus concluded that both consumers and providers would "win" if consumers had a meaningful role in the development and implementation of services.
Similarly, Campbell (1991) affirmed that the VR service system must recognize the consumer movement among individuals with psychiatric disabilities. This movement supports the notion of reduced professional interference in consumer decisions and choices. The author declared that the state-federal VR service model is in the process of radical alteration as consumers with psychiatric disabilities demand change from its traditional physical disability orientation. Campbell (1991) challenged organizations serving individuals with psychiatric disabilities to empower consumers by involving them at all levels of operation, including policy formulation and front-line service delivery.
Participatory Action Research
The leadership of the National Institute on Disability and Rehabilitation Research (NIDRR), in promoting the concept of participatory action research (PAR) (Bruyere, 1993; Graves, 1991; Walker, 1993), provided an excellent example of consumer-directed disability policy. Because PAR values the importance of involving those whom the research will affect (Whyte, 1991), it is conceptually analogous to CD. In addition, because PAR acknowledges the legitimate interests of persons with disabilities to self-determination and full participation, including participation in the research process, it is an empowerment strategy. Graves (1991) called attention to the credibility problem of rehabilitation research, noting that persons with disabilities often see research as irrelevant, and that many rehabilitation professionals view research as impractical. The participation of consumers with disabilities in identifying research problems increases the probability of relevant research results. More specifically, PAR may maximize the impact of research on real-life consumer situations, an outcome that is "highly desirable in this era of limited research resources and pressing program needs" (Bruyere, 1993, p. 62).
There are also changes that can be made to promote CD at the individual level. Enhancing rehabilitation counselor-consumer partnerships is one of these changes. Chan et al. (1997) described how the "working alliance" could be used as a framework to ensure active consumer involvement in the rehabilitation process. Theoretically, the working alliance is viewed as a collaborative effort in which the counselor and consumer make equal contributions to the counseling relationship. It reflects a belief that the consumer can participate in the counseling process based on a sense of ownership (Al-Darmaki & Kivlighan, 1993). Illustrating the potential significance of individual-level CD, Chan et al. (1997) concluded that a "strengthened working alliance between the counselor and the consumer will result in more positive rehabilitation outcomes and higher levels of consumer satisfaction" (p. 135).
Implications of Consumer Direction
Implicit within the underlying assumptions, conceptual framework, and examples of CD, is the belief that increased CD would facilitate more effective policy making, program implementation, and research. Consumer-direction thus has the potential to significantly improve rehabilitation service delivery and enhance the quality of life of consumers with disabilities. This potential impact of CD has several direct implications for consumers with disabilities, service providers, and funders of rehabilitation services. These implications include (a) the changing roles of consumers and service providers, (b) the empowerment of consumers with disabilities, and (c) specific benefits to consumers and service providers and funders.
Roles of Consumers with Disabilities and Service Providers
In a consumer-directed rehabilitation service system, the roles of consumers and providers differ from those in traditional service systems, such as the state-federal VR program, workers' compensation programs, and medical rehabilitation. The primary difference is that the consumer has the ultimate responsibility for the services he or she receives. In a consumer-directed model, the consumer is responsible for choosing a service delivery process that meets his or her needs and for monitoring the quality of services received (Racino & Williams, 1994). Consumer direction implies that consumers should assess their own needs, select service options that reflect personal preferences, and communicate openly and frankly with service providers about changing needs (NICDLTS, 1996a).
The provider reports directly to the consumer in a consumer-directed rehabilitation service model. Individual service providers are responsible for meeting the consumer's expectations for quality and training and for providing reliable services as directed by the consumer (Racino & Williams, 1994). Provider organizations that have incorporated elements of CD in their mission assume the following set of responsibilities: (a) ensuring a maximum range of service options that reflect consumer preferences; (b) providing clear, easily understood information to consumers about service options and eligibility criteria for options; (c) including consumers in agency planning in a meaningful way; and (d) administering an evaluation process that provides consumer feedback to staff (NICDLTS, 1996a).
Consumer Direction as an Empowering Process
Empowering processes are those in which people create or are given opportunities to control their own destiny and influence the decisions that affect their lives (Bolton & Brookings, 1996; Hahn, 1991; Zimmerman, 1995). These processes provide individuals the opportunity to achieve goals, obtain greater access to and control over resources, and gain mastery over their lives (Cornell Empowerment Group, 1989; Mechanic, 1991; Zimmerman, 1990). Efforts to gain control, to access resources, and to critically understand one's sociopolitical context are fundamental aspects of CD. As empowering processes, consumer-directed disability policy development and rehabilitation service delivery include the opportunity for consumers to enhance resource development skills, to work with others on a common goal, and to develop leadership abilities.
Benefits of Consumer Direction
There are many potential benefits of a consumer-directed approach to rehabilitation. For example, research has shown that consumers with disabilities who participated in a consumer-directed personal assistance services (CD-PAS) program were significantly more productive (p [is less than] .05) than a matched control group of consumers who did not participate in the program (NICDLTS, 1997). Results of this study also indicated that the consumers who were involved in CD-PAS had significantly higher (p [is less than] .05) rates of involvement in paid and unpaid work, education, active homemaking, recreational activities, and self-improvement than prior to their involvement in CD-PAS. Additional direct benefits of consumer-directed services for people with disabilities may include: (a) increased autonomy in decision making about service needs; (b) control over the ways in which services are arranged; (c) enhanced life management skills and feelings of competence as a result of the ability to manage services; and (d) increased ability to determine and shape individual lifestyles (NICDLTS, 1996b). Furthermore, a consumer-directed delivery system may also provide significant benefits for funders and providers of rehabilitation services including (a) increased consumer satisfaction, (b) improved quality of services, and (c) decreased costs.
In this article, the construct of consumer direction was applied to disability policy formulation and rehabilitation service delivery. The underlying assumptions and conceptual framework of CD were described in detail. In addition, specific examples of CD were provided and the implications of CD were discussed.
Consumer direction is a construct of great interest to the field of rehabilitation because it relates directly to the empowerment of people with disabilities. As illustrated in the examples of CD, the issue of CD spans all consumer groups, service types, providers and funders of rehabilitation services, and policy makers at local, state, and national levels. As such, CD should be a primary focus of disability policy making, program development and evaluation, and rehabilitation research. As aptly stated by Seelman and Sweeney (1995), "there must be continuing stress on increased consumer participation and involvement in all rehabilitation programs at all levels of operation" (p. 11).
Given the changing context of rehabilitation (Ryan, 1995; Leahy & Szymanski, 1995), increased CD would extend the range of variation of systems designed to serve people with disabilities. The CD components of increasing the variety of service options and enhancing consumer input into systems design suggest that consumer-directed models would better acknowledge the variation associated with disability than traditional service delivery models. As such, CD can help us address "legitimate issues of resource allocation and the need for creative adaptation by established institutions" (Scotch & Schriner, 1997, p. 156), such as the state-federal VR program and managed health care providers. Further, and most importantly, increased CD in disability policy formulation and rehabilitation service delivery may facilitate the empowerment of people with disabilities. Empowerment, in turn, would promote the increased community integration and enhanced quality of life of individuals with disabilities.
Given the importance of debate on disability rights (Schroeder, 1995), now is the opportune time for discussion of new paradigms such as the one described here. A great deal of work remains to be done to shape public policy so that it promotes the achievement of independence for persons with disabilities (Scotch and Schriner, 1997). Consumers with disabilities, rehabilitation practitioners, and policy makers need new conceptual tools to understand the nature of disability and how it should be addressed in public policy and rehabilitation service delivery. The ideas presented in this article are intended as a guide in this important endeavor.
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John F. Kosciulek, Ph.D., CRC, Director - Rehabilitation Counseling Program, Department of Educational & Counseling Psychology, 16 Hill Hall, University of Missouri-Columbia, Columbia, MO 65211.
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|Author:||Kosciulek, John F.|
|Publication:||The Journal of Rehabilitation|
|Date:||Apr 1, 1999|
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