Consumer Direction for Disability Policy - Development and Reha=

bilitation 
Sender: owner-dpolicy@trip.tripil.com
Precedence: bulk
X_Mailing_List_Server: Majordomo 1.94.1
X_Mailing_List_Provider: TRIPIL (http://www.tripil.com)

>From the web page
http://www.mswitzer.org/sem99/papers/kosciulek.html

Paper presented to 1999 Switzer Seminar 

Implications of Consumer Direction for Disability Policy -
Development and Rehabilitation Service Delivery

                  Mary Switzer Memorial Seminar
              National Rehabilitation Association
                      September 27-29, 1999
                        East Lansing, MI

                  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
                     (573) 882-7890 (phone)
                      (573) 884-5989 (fax)

                 kosciulekj@missouri.edu (email)

                            Abstract

People with disabilities too often are denied the opportunity to
exercise control over the most basic aspects of daily life.
Consumer direction (CD) is philosophy and orientation whereby
informed consumers have control over the policies and practices
that directly affect their lives. It is a mechanism by which
individuals with disabilities can develop the skills to take
control of their lives and their environment. The primary tenet
of this paper is that increased CD in disability policy
development and rehabilitation service delivery will lead to
increased community integration, empowerment, and quality of
life among people with disabilities.

In this paper, the concept of "consumer direction" is presented
as a guide for disability policy development and rehabilitation
service delivery. First, consumer choice, the current status of
people with disabilities in United States society, and the need
for CD are discussed. Following this discussion, an overview and
definition of CD are presented. The underlying assumptions of CD
are then described. Next, a conceptual framework of CD is
presented which outlines the four primary components of CD.
Issues surrounding the measurement and operationalization of the
concept of CD are then discussed. Five examples of CD are
presented to illustrate how the principle of CD may be infused
into disability policy making and rehabilitation services.
Finally, the implications of CD relative to consumer and service
provider roles, the empowerment of people with disabilities, and
the potential benefits of CD are discussed.

Implications of Consumer Direction for Disability Policy

Development and Rehabilitation Service Delivery

Introduction: Consumer Choice, Current Status of People with

Disabilities in U.S. Society, and the Need for Consumer Direction

If people with disabilities are to experience personal
satisfaction and quality of life (QOL), they must play the
central role in directing the disability policy development and
rehabilitation service delivery that are central to their
empowerment. To empower a person is to provide him or her the
opportunity to make choices and decisions regarding his or her
life. Choice and control are highly valued prerogatives that
reflect the autonomy, identity, and independence of an
individual (Condeluci, 1987). The right to make choices, express
preferences, and exercise control over life issues are critical
ingredients for empowering and enhancing the QOL of persons with
disabilities (Kiernan & Hagner, 1995).

Unfortunately, people with disabilities too often are denied the
opportunity to exercise choice and control over the most basic
aspects of daily life. The opportunity to make choices
concerning living arrangements, work, and recreation has been
limited or is nonexistent for many individuals who have
disabilities (Kosciulek, 1999a). For example, some individuals
may never have been provided with more than one choice, adequate
information about alternatives may never have been made
available, decisions may have been made by professionals who
feel they know best, or capabilities and self-assertions may
have been ignored or underestimated (Parent, 1993).

Choices made by persons with disabilities are often based upon
the avoidance of undesirable alternatives or upon the acceptance
of the available rather than on true preferences. External
forces such as agency regulations, lack of accessibility,
inadequate supports, or stereotypical attitudes have frequently
restricted decisions (Hagner & Marrone, 1995). In addition,
while sometimes individuals with disabilities are involved in
disability policy development and rehabilitation service
delivery in a minor or token fashion (e.g., membership on an
advisory council), these processes continue to occur, to a large
extent, without the participation and involvement of people with
disabilities (National Council on Disability [NCD], 1996).
Parent (1993) concluded unequivocally that "it has become
increasingly evident that the powerlessness and lack of
self-direction often felt by people with disabilities are more
frequently related to the attitudes and practices of caregivers,
service providers, funding agencies, social institutions, and
society in general, rather than to any limitations or
impairments resulting from the disability itself" (p. 21).

Echoing this belief, 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 many of the
difficulties faced by people with disabilities are not the
result of functional impairments related to disability, but
rather are the result of castification 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).

A significant negative outcome of the situation surrounding
limitations in consumer choice, rigid disability policies, and
institutionalized rehabilitation services is that currently in
U.S. society, people with disabilities, as a group, remain
poorer, less educated, and less employed than the population in
general (Kosciulek, 1998; NCD, 1996). Consequently, the purpose
and outcome of public disability policy and rehabilitation
service delivery must be to enhance the QOL 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. A growing
belief has emerged in recent years that consumers of
rehabilitation services should gain power over the services they
receive, and, in the process, gain or regain control over their
lives (Bolton & Brookings, 1996; Emener, 1991). People with
disabilities must play the central role in directing the
disability policy development and rehabilitation service
delivery that is central to their empowerment. It is time to
move beyond the rhetoric of empowerment and consumer choice and
develop the policies and service system necessary to enhance the
QOL of people with disabilities.

To accomplish this important objective, new concepts and
frameworks are needed to understand the nature of disability and
how it should be addressed in public policy and rehabilitation
service delivery (Kosciulek, 1999a). The emergence of useful
concepts in any field is one of the prime indicators of
progress. Further, conceptual models are important for guiding
research, program evaluation, and clinical practice (Estes,
1993). Unfortunately, the disability policy and rehabilitation
literature have provided little information regarding models or
constructs that might be useful in conceptualizing specific ways
to enhance consumer empowerment (Zimmerman & Warschausky, 1998).
The scarcity of useful paradigms for examining the factors that
influence consumer empowerment and QOL has led, in part, to
ill-conceived disability policies and rehabilitation services
(Hagner & Marrone, 1995; Holmes, 1993), research lacking in
practical application and utility (Bruyere, 1993; Graves, 1991),
and continued employment, economic, and social barriers
encountered by people with disabilities (Campbell, 1991; Dart,
1992; President's Committee on Employment of People with
Disabilities, 1998). To begin to ameliorate this situation, in
this paper, the concept of "consumer direction" is presented as
a guide for disability policy development and rehabilitation
service delivery processes that lead to increased empowerment
and QOL among people with disabilities. The primary tenet of
this paper is that increased CD in disability policy development
and rehabilitation service delivery will lead to increased
community integration, empowerment, and quality of life among
people with disabilities.

Overview and Definition of Consumer Direction

Disability is a natural part of the human experience. The
ability to control one's existence is also an essential part of
being human (National Institute on Consumer-Directed Long-Term
Services [NICDLTS], 1996a). Consumer direction refers to those
activities whereby consumers with disabilities develop a sense
of personal control and acquire the opportunity to influence
social and political systems (e.g., the policies and practices
of the state-federal vocational rehabilitation [VR] system)
(Kosciulek, 1999a). It is an approach to the development of
disability policy and delivery of rehabilitation services
whereby informed consumers have control and the opportunity to
make choices. In a consumer-directed system, individuals with
disabilities assess their own needs, determine how and by whom
these needs should be met, and monitor the quality of services
received (NICDLTS, 1996a).

Consumer direction may 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 an individual using a representative to manage
needed services (Kosciulek, 1999a). The unifying theme in CD is
that individuals with disabilities have the primary 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. Choice and control are both key elements in a
consumer-directed rehabilitation service system (Dart, 1992;
West & Parent, 1992).

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 often 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 who 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 allow
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. 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;
NCD, 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 VR
agency implement a State Rehabilitation Advisory Council which
includes individuals with disabilities.

Measuring and Operationalizing Consumer Direction

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. Observations of CD may take
on different forms in different populations, contexts, and time.
The contextual nature of CD is consistent with the "new paradigm
of disability" described in the 1999-2004 Long-Range Plan of the
National Institute on Disability and Rehabilitation Research
(NIDRR, 1998). In this new paradigm, disability is viewed as a
product of the interaction between characteristics of the
individual (e.g., conditions of impairment, functional status,
or personal and social qualities) and characteristics of the
natural, built, cultural, and social environments.

The open-ended nature of many disability and rehabilitation
constructs thus 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 spinal cord injury.
Consequently, as discussed by Kosciulek (1999b), 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 (Kosciulek,
1999b). 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, 1999b).

Further development of the construct of CD should examine how
the control, service variation, information and support, and
policy-making components interact to form CD. Salient questions
of interest include: (a) How do the 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
(Kosciulek, 1999b).

The NIDRR (1998) Long-Range Plan states that researchers should
explore new ways of measuring and assessing disability and
rehabilitation services in context, taking into account the
effect of physical, policy, and social environments, and the
dynamic nature of disability over the lifespan and across
environments. In this regard, 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 4 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.

Voucher Systems. 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). A current example of a voucher system for rehabilitation
is the Individual Training Account model authorized under the
Workforce Investment Act of 1998.

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 had, as it's
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. By promoting the concept of
participatory action research (PAR) (Bruyere, 1993; Graves,
1991; Walker, 1993), NIDRR provided an excellent example of
consumer-directed disability policy. Because PAR values the
importance of involving those whom 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).

Counselor-Consumer Relationships. 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 definition, underlying assumptions,
conceptual framework, measurement, and examples of CD, is the
belief that increased CD will facilitate more effective policy
making, program implementation, and research. Consumer direction
thus has the potential to significantly improve rehabilitation
service delivery and enhance the QOL of people 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 rehabilitation services he or she receives (Kosciulek,
1999a). In a consumer-directed model, the consumer is
responsible for choosing a service delivery process that meets
his or her needs and for monitoring service quality (Racino &
Williams, 1994). Consumer direction implies that consumers
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 stated by Kosciulek (1999a),
consumer-directed disability policy development and
rehabilitation service delivery are empowering processes that
promote the opportunity for consumers to enhance resource
development skills, work with others on a common goal, and
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 < .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 < .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). Further, a consumer-directed delivery system may also
provide significant benefits for funders and providers of
rehabilitation services including increased consumer
satisfaction, improved quality of services, and decreased costs.

Conclusion

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 development, 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 QOL 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 related to CD presented in this
paper are intended as a guide in this important endeavor.

References

Al-Darmaki, F., & Kivlighan, D. M. (1993). Congruence in
client-counselor expectations for relationship and the working
alliance. Journal of Counseling Psychology, 40, 379-384.

Bolton, B., & Brookings, J. (1996). Development of a
multifaceted definition of empowerment. Rehabilitation
Counseling Bulletin, 39, 256-264.

Bruyere, S. M. (1993). Participatory action research: Overview
and implications for family members of persons with
disabilities. Journal of Vocational Rehabilitation, 3 (2), 62-68.

Callahan, M, & Skiba, J. (1997, April). Collaboration for
choice. Paper presented at the 10th Annual Rehabilitation
Services Administration, Region VII Issues Forum, Kansas City,
MO.

Campbell, J. F. (1991). The consumer movement and implications
for vocational rehabilitation services. Journal of Vocational
Rehabilitation, 1 (3), 67-75.

Chan, F., Shaw, L. R., McMahon, B. T., Koch, L., & Strauser, D.
(1997). A model for enhancing rehabilitation counselor-consumer
working relationships. Rehabilitation Counseling Bulletin, 41,
122-137.

Condeluci, A. (1987). Social role valorization: A model for
community reentry. Journal of Head Trauma Rehabilitation, 2 (1),
49-56.

Cornell Empowerment Group. (1989). Empowerment and family
support. Networking Bulletin, 1, 1-23.

Dart, J. (1992, September). Toward equality and empowerment.
Paper presented at the IBM Conference on Full Participation in a
Modern Society, Tokyo, Japan.

Emener, W. G. (1991). An empowerment philosophy for
rehabilitation in the 20th century. Journal of Rehabilitation,
57 (4), 7-12.

Estes, W. K. (1993). Mathematical models in psychology. In G.
Keren and C. Lewis (Eds.), A handbook for data analysis in the
behavioral sciences: Methodological issues (pp. 3-19).
Hillsdale, NJ: Erlbaum.

Graves, W. (1991, September). Participatory action research: A
new paradigm for disability and rehabilitation research. ARCA
Newsletter, pp. 8-11.

Hagner, D., & Marrone, J. (1995). Empowerment issues in services
to individuals with disabilities. Journal of Disability Policy
Studies, 6 (2), 17-36.

Hahn, H. (1991). Alternative views of empowerment: Social
services and civil rights. Journal of Rehabilitation,
Oct./Nov./Dec., 17-19.

Harp, H. T. (1994). Empowerment of mental health consumers in
vocational rehabilitation. Psychosocial Rehabilitation Journal,
17, 83-90.

Higgins, P. C. (1992). Making disability: Exploring the social
transformation of human variation. Springfield, IL: Charles C.
Thomas.

Holmes, G. E. (1993). The historical roots of the empowerment
dilemma in vocational rehabilitation. Journal of Disability
Policy Studies, 4 (1), 1-19.

Kiernan, W. E., & Hagner, D. (1995). Rehabilitation counseling
and the community paradigm. In O. C. Karan & S. Greenspan
(Eds.), Community rehabilitation services for people with
disabilities (pp. 255-276). Boston: Butterworth-Heinemann.

Kosciulek, J. F. (1999a). The consumer-directed theory of
empowerment. Rehabilitation Counseling Bulletin, 42 (3), 196-213.

Kosciulek, J. F. (1999b, April). Development of a theory and
measure of consumer direction for rehabilitation counseling.
Paper presented at the American Counseling Association World
Conference, San Diego, CA.

Kosciulek, J. F. (1998). Empowering the life choices of people
with disabilities through career counseling. In N. C. Gysbers,
M. J. Heppner, & J. A. Johnston, Career counseling: Process,
issues, & techniques (pp. 109-122). Boston: Allyn & Bacon.

Kosciulek, J. F. (1997, September). Improving rehabilitation
service delivery by enhancing consumer direction among persons
with disabilities. Paper presented at the 1997 International
Conference on Disability, Seoul, Korea.

Kosciulek, J. F., Vessell, R., Rosenthal, D. A., Accardo, C. M.,
& Merz, M. A. (1997). Consumer satisfaction with vocational
rehabilitation services. Journal of Rehabilitation,
April/May/June, 5-9.

Kosciulek, J. F. (1995). Impact of head injury on families: An
introduction for family counselors. The Family Journal:
Counseling and Therapy for Couples and Families, 3 (2), 116-125.

Leahy, M. J., & Szymanski, E. M. (1995). Rehabilitation
counseling: Evolution and current status. Journal of Counseling
& Development, 74, 163-166.

McGrath, J. E. (1982). Dilemmatics: The study of research
choices and dilemmas. In J. E. McGrath, J. Martin, & R. A. Kulka
(Eds.). Judgment calls in research (pp. 69-102). Beverly Hills:
Sage.

Mechanic, D. (1991, February). Adolescents at risk: New
directions. Paper presented at the Annual Conference on Health
Policy, Cornell University Medical College.

National Council on Disability. (1996). Achieving independence.
Journal of Disability Policy Studies, 7 (2), 57-65.

National Institute on Consumer-Directed Long-Term Services.
(1997). Consumer direction linked to higher productivity.
Consumer Choice News, 2 (3), 7.

National Institute on Consumer-Directed Long-Term Services.
(1996a). Principles of consumer-directed home and
community-based services. Washington, DC: Author.

National Institute on Consumer-Directed Long-Term Services.
(1996b). The benefits of consumer direction. Consumer Choice
News, 1 (2), 1-3.

National Institute on Disability and Rehabilitation Research.
(1998, October). NIDRR 1999-2004 Long-Range Plan. Washington,
DC: Author.

Parent, W. (1993). Quality of life and consumer choice. In P.
Wehman (Ed.), The ADA mandate for social change (pp. 19-33).
Baltimore: Brookes.

President's Committee on Employment of People with Disabilities.
(1998). Opening doors to ability. Washington, DC: Author.

Racino, J. A., & Williams, J. M. (1994). Living in the
community: An examination of the philosophical and practical
aspects. Journal of Head Trauma Rehabilitation, 9 (2), 35-48.

Ryan, C. P. (1995). Work isn't what it used to be: Implications,
recommendations, and strategies for vocational rehabilitation.
Journal of Rehabilitation, Oct./Nov./Dec., 8-15.

Schroeder, F. K. (1995, November). Philosophical underpinnings
of effective rehabilitation. Paper presented at the 16th Mary E.
Switzer Lecture, Assumption College, Worcester, MA.

Scotch, R. K., & Schriner, K. (1997). Disability as human
variation: Implications for policy. Annals of the American
Academy of Political and Social Science, 549, 148-159.

Seelman, K., & Sweeney, S. (1995). The changing universe of
disability. American Rehabilitation, (Autumn-Winter), 2-13.

Szymanski, E. M., & Parker, R. M. (1992). Low statistical power:
A blight on research [editorial]. Rehabilitation Counseling
Bulletin, 36, 2-5.

Szymanski, E. M., & Trueba, H. T. (1994). Castification of
people with disabilities: Potential disempowering aspects of
classification in disability services. Journal of
Rehabilitation, July/Aug./Sept., 12-20.

Taylor, S. J., Biklen, D., & Knoll, J. (1989). Community
integration for people with severe disabilities. New York:
Teachers College Press.

Thomas, K. R., & Strauser, D. R. (1995). Rehabilitating the
rehabilitation delivery system: A commentary on the voucher
system. Journal of Rehabilitation, Jan./Feb./Mar., 18-22.

Walker, M. L. (1993). Participatory action research [editorial].
Rehabilitation Counseling Bulletin, 37, 2-5.

West, M. D., & Parent, W. S. (1992). Consumer choice and
empowerment in supported employment services: Issues and
strategies. Journal of the Association for Persons with Severe
Handicaps, 17 (1), 47-52.

Whyte, W. F. (1991). Participatory action research. Newbury
Park, CA: Sage.

Zimmerman, M. A. (1995). Psychological empowerment: Issues and
illustrations. American Journal of Community Psychology, 23,
581-599.

Zimmerman, M. A. (1990). Taking aim on empowerment research: On
the distinction between psychological and individual
conceptions. American Journal of Community Psychology, 18,
169-177.

Zimmerman, M. A., & Warschausky, S. (1998). Empowerment theory
for rehabilitation research: Conceptual and methodological
issues. Rehabilitation Psychology, 43 (1), 3-16.

----------
End of Document





-- 
TNET Mail-To-News Gateway Version - 1.6
For information about this gateway email programs@tnet.com