CODI: Cornucopia of Disability Information

Chapter VIII: A Prosumer Approach For Disability And Rehabilitation Knowledge

 

Using Knowledge and Technology to Improve the Quality of Life of People who have Disabilities: A Prosumer Approach by Laura A. Edwards

Chapter VIII: A Prosumer Approach For Disability And Rehabilitation Knowledge Production and Use

 

I. THE PROSUMER APPROACH: A MINDSET

 

The world experienced unprecedented changes during the course of this study. East and West Germany united. The cold war between Russia and the United States ended. Communistic countries became more democratic. People around the world watched a war begin and be fought in the Gulf. Civil rights for Americans with disabilities became law. Anticipated changes include, but are not limited to, a global economy, cultural nationalism, and the rise of the individual. Information technology has helped foster many of the changes. Technology has opened access to information from around the world. People with and without disabilities can readily download pertinent information from other communities and countries directly into the home or business. Increased access to knowledge via technology helps individuals take greater control over their lives, and subsequently become empowered. All the recent and anticipated changes represent power shifts. This, the last decade of the twentieth century, is the decade for people with disabilities to become empowered, to have equal access to, and full participation in, education, jobs, transportation, and to improve their quality of life. The prosumer approach, gives them equal access to and full participation in the production and use of disability and rehabilitation knowledge that can help them better achieve their goals.

 

The prosumer approach builds on the recurring theme found in most knowledge utilization or technology transfer models and studies of factors. In fact because of this recurring theme, authors such as Glaser (1983) and Rogers (1983), who synthesized factors studies, have stressed the interrelatedness and interdependency of factors. That recurring theme is product and user fit: user-compatibility, user-specific products, user-advantage, user-understanding of the main finding, user-perceived complexity, user-trial of the innovation, user-modifying of the innovation, user readiness, user ability, and/or user's time and resources. The prosumer approach maximizes user involvement in every phase of knowledge production and use. It builds on the concept of applying scientific thinking at the practitioner level found in the progressive model (i.e., scientist-practitioner or reflective practitioner) and at the ultimate consumer level through participatory research, consumer-driven marketing, or being a personal scientist in the self-help modality. The prosumer approach builds on conceptual models that integrate instrumentalist (passive, reproductive use of research information) and transactional paradigms (active strategic use that transforms information) (Huberman, 1987) and that integrate the varied components of a social system of knowledge (Holzner, Dunn, and Shahidullah, 1987).

 

The time is ripe. More consumers are becoming assertive and mobilized for action on their own behalf. Such self definitions enable practitioners to alter their role definitions and enable organizations to restructure service delivery. Changing roles and structures in practice can lead to changes in roles and structures in research and in research utilization. Two communities, so alienated in the past, could become more unified by a common vision, a common mission, and a common mindset.

 

A. COMMON VISION, MISSION, AND MINDSET

 

The common vision that unites is a belief that people with disabilities have the right to self-determination, to live independently, and to access the same quality of life as any other citizen in the United States. The common mission for all stakeholders is to identify, develop, expand, refine, and/or use the resources--human, physical, financial, technological, spiritual, and intellectual (i.e., knowledge)--that most effectively and/or efficiently enable people with disabilities to maximize their rehabilitation and to exercise their rights and responsibilities as citizens. The prosumer approach is a mindset, a common way of looking at roles and relationships in order to help people with disabilities improve the quality of their lives. When rehabilitation professionals, rehabilitation scientists, and people with disabilities begin thinking of themselves as prosumers, collaborators in rehabilitation and collaborators in knowledge production and use, my expectation is that restrictive boundaries among clients, practitioners, and researchers will begin to dissipate. The prosumer mindset acknowledges the interdependency, viability, integrity, and worth of all stakeholders in the rehabilitation field. The prosumer mindset encourages all groups of stakeholders to help build the body of disability and rehabilitation knowledge and technology upon which rehabilitation and independent living depend.

 

B. THE PROBLEM

 

 People with disabilities and practitioners do not share with rehabilitation scientists a sense of responsibility for building the knowledge base that can lead to improved quality of life for people with disabilities. They have a wealth of information that is not being tapped by researchers and is not being integrated with the scientific body of disability and rehabilitation knowledge. Underused resources leaves gaps in knowledge; that is a problem.

 

Scientific knowledge does not have all of the answers. There are many areas of research that can be conducted in a co-participatory fashion by individuals with varying degrees of knowledge about research methods. With advances in information technology such as statistical software packages for the personal computer, even statistical analysis is less foreboding and less of a deterrent to novices in the research arena. With advances in journal writing (Progoff, 1974) and experience in using personal accounts to influence legislation as well as to provide foundations for research studies, rationale for excluding practitioners and clients from the process pale. In the light of landmark legislation giving civil rights to Americans with disabilities, it is time to also identify their right to participate fully in knowledge production and use. Beyond rights, contributing to the body of knowledge is one way to reciprocate for help received. Reciprocity helps restore psychological equity lost during helping transactions and can enhance self esteem (Fisher, et al, 1983).

 

In the late 1970's and 1980's the National Institute on Disability and Rehabilitation Research (NIDRR) began adding people with disabilities to peer review panels for grant proposals and requiring proposals to identify consumer's needs. They also began requiring Research and Training Centers to add consumers to advisory committees. They have invited consumers to public hearings and to respond to proposed priorities in the Federal Register. What they have not done is to educate and encourage all stakeholders to share responsibility for producing and using disability and rehabilitation knowledge.

 

A second related problem is that dissemination and utilization efforts in NIDRR have not yet become fully integrated with the knowledge production process. It is still treated as a stepchild to the process rather than an integral part of it. NIDRR does require consumer needs assessments and dissemination plans in research projects. What it does not do, however, is build utilization into key research projects; it stops at dissemination. To build utilization into appropriate projects requires changing the length of those research projects and the periods of competition. In some instances, longevity must be assured to enable adequate development in a given area of study for better utilization. For example, current three-year projects in appropriate research areas, if successful, could be given additional monies for two to three years to carry out proposed or revised utilization plans. Research and Training Centers working in areas of high and frequent changes such as information technology or aides, likewise could be given extensions without re-competing for an appropriate time-period.

 

Current research dissemination directions advocated in the federal Department of Education for education (Klein & Gwaltney, 1990) and under consideration for rehabilitation do address some of the complexities of the research utilization process. They are forward thinking and comprehensive within the dissemination infrastructure. They offer an easy to follow delineation of dissemination functions: spread, choice, exchange, and implementation. They fall short, however, by being limited to the dissemination infrastructure. The problems besetting effective knowledge utilization lie in the mindset with which it is approached and not in the many strategies and tactics for implementation.

 

II. THE PROSUMER APPROACH: COMPONENTS & NIDRR'S ROLE

 

The components of the prosumer approach to knowledge production and use consist of acknowledgement of prosumers, prosumer priority setting for research allocations, interactive knowledge production and use, legitimization and synthesis of prosumer knowledge, educating and sponsoring consumers and practitioners in knowledge production and use, equal access to knowledge, user responsibility and control of the use of developed knowledge, identification and use of ignorance, and flexibility.

 

PROSUMERS:

 

'Prosumers' share the responsibility for producing and consuming disability and rehabilitation knowledge. They do so in varying degrees and in varying ways. For some, knowledge production is a career for which they are compensated while for others helping in knowledge production is voluntary with no monetary rewards. For some this responsibility is carried out with the backing of institutions of higher education and for others it is carried out through self-help organizations, professional associations, public and private rehabilitation programs. Some prosumers choose to contribute more at the beginning or end of the process while others prefer being involved in every phase of the process.

 

Prosumers include people with disabilities (i.e., clients, students, patients, rehabilitants, and alumni), family members or significant others, practitioners, educators, policymakers, administrators, and rehabilitation research scientists. The term prosumer also applies to the organizations, institutions, businesses, agencies, etc. who individually or collaboratively have an interest in helping to produce and consume disability and rehabilitation knowledge.

 

NIDRR's role for this component of the prosumer approach is twofold:

 

(1) to promote the philosophy of shared responsibility for knowledge production and use among prosumers and (2) to provide opportunities for all interested prosumer groups to understand and contribute to the body of disability and rehabilitation knowledge.

 

PROSUMER PRIORITY SETTING FOR RESEARCH ALLOCATIONS:

 

All prosumer groups have the opportunity to participate in setting priorities for research resource allocations. Knowledgeable prosumers participate currently in up to four ways: (1) by responding to proposed priorities in a given issue of the Federal Register, (2) by participation in public hearings on long-range plans or research needs, (3) by visiting and talking to staff at the National Institute on Disability and Rehabilitation Research (NIDRR), National Council on Disability, or the Interagency Committee on Disability, and (4) by conducting and submitting research reviews that point to gaps in knowledge. Under the prosumer approach, an added role for NIDRR is to inform consumers and practitioners of these ways of participating in priority setting.

 

The prosumer approach adds one other avenue of participation in the priority setting process. Leaders of coalition bodies of prosumer groups (e.g., coalition of people with disabilities; National Association of Research and Training Centers) serve on a priority setting panel to assist NIDRR staff in allocating annual resources and in recommending priorities in broad areas for future years. This serves two purposes: to promote unified activities among the many diverse organizations of people with disabilities and to give the unified leaders a greater voice in the final resource-allocation processes.

 

INTERACTIVE KNOWLEDGE PRODUCTION AND USE:

 

The interactivity component applies in three ways: (1) knowledge production to use and use to production through a feedback mechanism; (2) prosumer to prosumer during the production and use process; and (3) prosumers to and from information systems and resource centers that house the body of disability and rehabilitation knowledge and technology.

 

Under the prosumer approach NIDRR promotes the interactivity between production and use by sponsoring five-year projects that not only conduct the research and disseminate results but also introduce the results directly into an appropriate setting, (e.g., service delivery, policymaking). That use may be adapted use or even rejected use but the research group will document the interactions and responses from the selected user setting. Extended time for studies is only one aspect to integrating production and use. Prosumer advisory groups to such research projects can help assure applicability of the research to the selected setting.

 

NIDRR can promote the prosumer to prosumer interaction by sponsoring participatory research projects in service delivery settings, self-help organizations, and communities working for environmental or attitudinal changes on behalf of people with disabilities. They can also require that research and training centers not engaging in participatory research, continue to have prosumer participation on an advisory committee or focus-group basis during the research production and use phases.

 

To enhance interactivity between prosumers and information service systems or technology resource centers, NIDRR can base future funding on the submission of progress and final reports of studies to designated national information centers. They can also assess use of information systems by applicants for funds in their literature reviews and documentation of the needs.

 

EDUCATING & SPONSORING CONSUMERS & PRACTITIONERS:

 

Educating consumers and practitioners (two groups of prosumers) in ways to contribute to knowledge production and use is essential to the success of the prosumer approach. NIDRR's role in this component includes sponsoring educators and research facilitators to train interested leaders of consumer groups and practitioners in the essentials for preparing useful case studies, local surveys of needs and problems, participatory-observation studies, journal summaries, reflective practice accounts, and/or autobiographic disability experiences.

 

As a followup to the education process, NIDRR would sponsor practitioners in conducting case studies or caseload studies on a short-term basis (e.g., 90-120 days) in either an integrated-with-routine approach or time-off-from-routine approach. Such studies could also include reflections on practice.

 

NIDRR would also sponsor coalition groups among disability organizations to conduct disability specific needs assessments and community environmental surveys and/or collect anecdotal material from journal summaries or autobiographical accounts.

 

LEGITIMIZATION & SYNTHESIS IN KNOWLEDGE PRODUCTION AND USE:

 

In the scientific world paradigms, generalizations, and principles on which to base practice derive from consensual validation of phenomena studied, replicated, and surviving the falsification process. The prosumer approach continues formally and informally legitimizing the research results from reputable studies and exemplary practices as contributions to disability and rehabilitation knowledge.

 

Under the prosumer approach, NIDRR assists in determining reputable studies first by publishing criteria for assessing quality in studies from a wide range of research methodologies including participatory research, case studies, and participant-observation studies. Utility as well as validity should be included in the criteria.

 

NIDRR also sponsors a national consensus panel(s) to review results from several related studies in a priority area and to recommend areas of consensus among the findings. The panel process includes use of assistants for compiling research summaries for panelists' review and of convening a group of prosumer reactors to the panelists' recommendations. The panel(s) further legitimize the work of prosumers.

 

In addition to the consensus panels, integration and synthesis of research results on a given topic occur at several major junctures in the prosumer approach: meetings, publications, and electronic bulletin board or data base systems. Meetings of the Interagency Committee on Disability and Rehabilitation Research and national meetings of coalition groups or professional and consumer organizations provide opportunities to integrate the latest knowledge. Preservice and inservice educational programs integrate new research into curricula and into workshops. State-of-the- art studies (using meta-analysis when appropriate) and Rehab Briefs provide, along with topical journal articles, printed syntheses. National information service system(s) provide abstracts, summaries, and directories linking resource knowledge. Regional Information Exchanges represent groups actively searching for solutions to problems experienced in varous service delivery settings. Their staff actively search for syntheses to use or when lacking, search the exemplary practices and their knowledge bases for answers.

 

NIDRR can add to the integration of knowledge produced in a given year in several ways: (1) by summarizing knowledge resources developed in that year by topics; (2) by distributing summaries to designated national information centers for disability and rehabilitation knowledge who in turn notify their constituencies of the availability of reports and summaries; and (3) by encouraging all prosumer groups to integrate the summary information into their own plans, policies, and programs where appropriate.

 

EQUAL ACCESS TO KNOWLEDGE:

 

 Research produced with public funds is publicly owned. The public has a right to see what their money produced. Prosumers have a right to information that can help improve the quality of life for people with disabilities. While in other circles, information is a commodity, in the service industry with lives at stake, that cannot be. Therefore, in the prosumer approach all prosumers using public funds for research are not only required to submit to a designated national information center summaries of findings and how those findings were derived but failure to do so could jeopardize future funding in a subsequent funding cycle. What other uses are made of the research to further one's career or organizational positioning in the funding process is up to the prosumer.

 

Equal access at the designated center means electronic, phone, and mail access for those geographically dispersed. It means nominal costs for those who can ill afford to purchase the materials. It means large print, braille, or taped formats for those with limited sight. It means TTY's or interpreters for people who are deaf or translation services for people who are culturally disadvantaged when spoken or written English is a second language.

 

USER RESPONSIBILITY AND CONTROL OF THE DEVELOPED KNOWLEDGE:

 

 Besides involving potential users in the production process, the prosumer approach promotes the integration of production and use in still another way: by recognizing the continuum of usages, by promoting user responsibility for remaining consistent with the producer's intended usages, and by giving control of the usage to the user. Use of newly developed knowledge may mean reinvented, converted, adapted, modified, partial, or even rejected use. While users should be encouraged to try the model or innovation out as designed first and then modify, that is not always practical nor desireable. The user, however, does have the responsibility to understand the innovation or research results, how it was derived, and its intended uses before venturing too far afield from the intended use.

 

FLEXIBILITY:

 

As part of the prosumer model NIDRR staff have the responsibility to stay abreast of national and international trends and events and to engage prosumer coalition leaders or their designees in helping make necessary revisions to plans, policies, and practices. Staff have the responsibility for recognizing and using scientific ignorance as it relates to disability and rehabilitation. They also have the responsibility for being responsive to public reactions, budget reductions, and political changes that can affect the production and use of research among selected audiences.

 

III. THE PROSUMER APPROACH: ROLES OF OTHER ORGANIZATIONS

 

Rehabilitation Services Administration:

 

The Rehabilitation Services Administration (RSA), in the prosumer approach, helps identify gaps in knowledge from national program evaluations and needs assessments. They sponsor the Institute on Rehabilitation Issues studies, demonstration, experimental, and innovative projects as well as curricula development projects that supplement research sponsored through NIDRR. RSA submits, and encourages prosumers to submit, research results to the designated national center for rehabilitation and disability information. They annually conduct national needs assessments or program evaluations and submit reports to the national center. They interpret research in the framework of national service delivery efforts and make special efforts to integrate research into RSA's plans, programs, and policies.

 

STATE REHABILITATION AGENCIES WITH CSAVR/NCSPB:

 

As active participants in the prosumer approach to knowledge production and use, state rehabilitation agencies can contribute to the priority setting process by conducting state program evaluations and needs assessments. By conducting these annually and submitting the results to the national center for access by all prosumers, they add to the body of knowledge and of ignorance. Interpreting research from a statewide service delivery perspective and annually integrating research results into state plans, programs, and policies can help improve services and hopefully outcomes for people with disabilities.

 

PRIVATE AGENCIES WITH NARF/NAC/ETC.:

 

Private agencies and the professional organizations that work closely with them can identify gaps from the private perspective through program evaluations and needs assessments. They could conduct studies specific to their unique but related rehabilitation needs. Of course, all studies would be submitted to the national information center on disability and rehabilitation and NIDRR to further the state of the art and to share with other prosumers. They would interpret the research from their organization's perspective and integrate relevant results into their organizations' plans, programs, and policies.

 

PROFESSIONAL ORGANIZATIONS:

 

Professional organizations in the prosumer approach would identify gaps in professional bodies of knowledge and standards of practice. Annually they would assess gaps or progress in meeting those gaps and submit a report to the national information center on rehabilitation and disability. They would interpret research from the framework of professional standards and knowledge for improved service delivery. They would integrate research results through conference presentations, publications, exhibits, and training programs. They would actively work to apply the results to efforts to remove attitudinal and physical barriers to rehabilitation and quality of life for people with disabilities.

 

DISABILITY/FAMILY ORGANIZATIONS:

 

Disability and parent organizations, in the prosumer approach, would have the role of identifying problems in survival and in quality of life. If each organization would annually study, document, and submit a report to the national information center on one or more problems or solutions found to specific problems, they could add significantly to the common body of knowledge. When it comes to interpretation of research results, they would use the framework of their life experiences as a person with disabilities or a family member of a person with disabilities. They would seek to integrate relevant research into modified or changed self-help activities and advocacy efforts toward barrier removal.

 

UNIVERSITIES/COLLEGES:

 

RTC/REC/R&D/FIR/INNOVATIVE/FELLOWSHIPS

 

Research programs such as the Research and Training Centers and the Rehabilitation Engineering Centers based at unversities and colleges have a major responsibility in the prosumer approach. Not only are they the primary researchers but also the facilitators of the research conducted by others. Their role must include identification of gaps in the disciplinary and interdisciplinary bodies of knowledge related to disability and rehabilitation. It must also include issues identification and the identification of multiskills versus multidisciplines needed to address those issues through research. The national, regional lab and group studies as well as technology development would be a primary contribution to the literature and resources from these groups. The university-based researchers would interpret research in the framework of prior research in disability and rehabilitation. They would integrate the new knowledge into the scientific body of applied knowledge on topics they have focused upon. Under the prosumer approach, they would also actively seek out experiential evidence to use in designing scientific studies and verifying collective judgments of service providers and consumers.

 

PROFESSIONAL PREPARATION PROGRAMS:

 

Professional preparation programs sponsored by the Rehabilitation Services Administration can help promote learners becoming involved in research priority setting processes. They can help identify gaps in education, practice, and new technology access and use. They can design, conduct, and analyze research related to curricula including courses, practica, and instructional methodologies. By submitting curricula and course studies to the National Clearinghouse of Rehabilitation Training Materials they can spread the availability of resources for improving curricula at the pre-work and post-work levels of education and training.

 

REGIONAL CONTINUING EDUCATION PROGRAMS (RCEPS):

 

Regional Continuing Education Programs can identify gaps in education, practice, and new technology access and use to contribute to the research priority setting process. They can conduct educational needs assessments and training evaluations which could contribute to the resources available from the National Clearinghouse of Rehabilitation Training Materials. They would interpret research from the framework of continuing education and service delivery and integrate new innovative findings into their continuing education curricula. They also can help train consumers and practitioners in self-observation techniques.

 

CONGRESS:

 

Congress has a role to fill in the prosumer approach also. They legislate to help fill the research, service delivery and social policy gaps that affect the survival and quality of life of people with disabilities. They should be aware of the kinds of studies being undertaken and mandate that all studies from public funds be available in summary report form and progress report form in a designated national or international disability and rehabilitation repository such as the National Rehabilitation Information Center. Their interpretation of research results from annual summaries developed by NIDRR would be from the framework of societal and global issues. They would help integrate research into laws and regulations.

 

NARIC/NCRTM/ABLEDATA:

 

The National Rehabilitation Information Center (NARIC) has the responsibility of collecting, classifying, storing, and retrieving research reports and other rehabilitation literature. In the prosumer approach they are responsible for making their holdings accessible to all prosumers in the forms they best can use. They also have the responsibility of listing and circulating summary reports of research conducted by each differing prosumer group. They interpret research results in terms of the NARIC collection of literature and related national collections of rehabilitation and disability information. They maintain an archives illustrating the growth of the field of rehabilitation. They provide reference and referral services. The National Clearinghouse on Rehabilitation Training Materials provides similar services with an emphasis on curricula, courses, and audiovisual aids for educational purposes. The Adaptive Equipment Center collects, stores, and retrieves information on the national assistive devices and technological resources.

 

REGIONAL INFORMATION EXCHANGES:

 

Currently, the Regional Information Exchanges help identify gaps in knowledge and barriers to successful practice. They identify criteria for identifying exemplary practices. They assess practices to promote as exemplary and help structure interfaces between innovators and innovatees. That interface may be in the form of literature, phone contacts, face to face contacts, or via other media. RIE's interpret the research from the framework of the user organization's needs and concerns. Their main goal is to integrate research into practice settings. Their future goal may be to facilitate education and integration of consumers into all aspects of the knowledge cycle until consumers are truly prosumers.

 

INTERNATIONAL INFORMATION EXCHANGE PROGRAMS:

 

The participants in the international exchange programs help identify research priorities pertinent to international problems. They sponsor research efforts in other countries by Americans and disseminate the results in America. They make research results available through the National Rehabilitation Information Center and through their own promotional efforts as in the past.

 

NATIONAL COUNCIL ON DISABILITIES:

 

As a NIDRR & RSA oversight body and in the framework of the prosumer approach, the National Council on Disabilities (NCD) funnels concerns of people with disabilities into the priority setting panel. NCD is aware of ongoing research addressing concerns. They would encourage prosumers to submit summaries of research completed to the designated National Rehabilitation Information Center. NCD interprets research results from the framework of national needs of people with disabilities. Their integration role would include integrating research into the national disability plans, policies, and oversight activities.

 

IV. THE PROSUMER APPROACH: BENEFITS & BARRIERS

 

A. BENEFITS

 

The 'prosumer' approach to knowledge utilization taps the best from knowledge utilization models such as the progressive clinical model, the integrated model, the knowledge system model, and the concerns-based adoption model. It highlights the product and user fit theme underlying studies of factors by making users an interdependent part of the entire process. It takes into account the broadened social construct to disability given in the recent Americans with Disabilities Act. More specifically, the 'prosumer' approach includes the missing parts in other models: people with disabilities and their service providers integrally involved with social scientists in the control of research design, methods, implementation, and to some extent, resource allocations. In its simplest form the 'prosumer' approach embeds knowledge in action at the organizational and individual level for service providers and disabled consumers as well as policymakers and other researchers. Because of the increased utility and compatibility of the research products created by prosumers, i.e., a better fit, I expect significant increases in the use of research.

 

B. POTENTIAL BARRIERS TO THE PROSUMER APPROACH

 

For studies involving consumer-directed organizations, self-help groups, and conclaves of consumers, this approach is definitely workable. Some organizations are conducting environmental surveys now and submitting findings to mayors and community committees. How to involve individuals who are cognitively impaired as well as physically impaired will challenge the best minds. However, it is possible to do. Autobiographical experiences of disabled individuals have already entered into the stream of disability research. Journal writing by those clients capable of doing so can contribute to self-assessment and self-adjustment; selected excerpts by clients from their journals can contribute to the body of knowledge. Researcher-facilitated studies rather than researcher-controlled studies will take longer but may produce greater longer-termed benefits. Redistribution of funding within NIDRR to assure groups of consumers, their significant others, and service providers have equal opportunities and access to knowledge production and use requires sharing not only power and control but limited financial resources. Not all researchers or the institutions they represent are likely to want to share limited resources. Reeducation of researchers and other prosumers as to how they can work together most effectively for the benefit of all concerned will need to take place. Convincing practitioners of the importance of reflecting on their work and documenting their reflections must begin in the professional preparation programs. Training in how to conduct single-subject studies missed in the preservice levels will need to occur at the inservice level to help them conduct single subject studies. Supervisors and administrators need to encourage professionals to do this by allowing time and providing needed resources.

 

 Integrating scientific and experiential knowledge will not be easy. However, the rewards of wholistic approaches to understanding a phenomena will be evident in time. First person accounts can be provided without cultural biases, personality characteristics, places and times of training, and subjective interpretations invading the conclusions. How to do this effectively will need to be understood. Consumers who have cognitive disabilities present another problem in pursuing involvement in research activities. They have their stories to tell, their perceptions of the world, and how they are treated in the world. Helping them contribute significantly will be a challenge but one that can be met with creativity. The key will be in using the varied forms of research as pieces to the puzzle.

 

V. Implementing the model

 

Implementation of the prosumer approach will require time, attitude change efforts, and resources. Implementation begins with creating an environment receptive to the prosumer approach. That would take a minimum of two years. Years three and four should focus on setting the structure in place for the model. By the fifth year implementation should begin. The objectives supporting each goal follow:

 

Years 1-2

 

Goal: Create an environment for receptivity to the prosumer approach among all potential prosumers.

 

Objectives:

 

1. Review and refine the proposed prosumer approach--rationale, components, roles, and goals--with NIDRR, RSA, and OSERS staff.

 

2. Review the refined prosumer approach with NIDRR grantees and modify as needed.

 

3. Review the modified prosumer approach with representatives of disability groups, centers, and organizations. Refine further as needed.

 

4. Conduct regional public hearings.

 

5. Seek public comments through the Federal Register.

 

6. Finalize the prosumer approach.

 

Years 3-4

 

Goal: Set up the structure for implementing the prosumer approach.

 

Objectives:

 

1. Establish criteria and procedures for selection and participation of coalition leaders in priority setting for resource allocations.

 

2. Establish integrative mechanisms between the knowledge production and use process, among prosumers during the process, and between prosumers and information service systems.

 

3. Establish integrative mechanisms that make available the continuum of quality knowledge--scientific and experiential--on a given disability or rehabilitation topic.

 

4. Develop the followup mechanisms to assure that all government funded disability and rehabilitation studies are available and equally accessible to all prosumers.

 

5. Establish mechanisms for educating and promoting prosumer responsibility for knowledge production and use and that respects the integrity of the study.

 

Year 5

 

Goal: Begin implementing the prosumer approach.

 

Objectives:

 

1. Involve representatives of all prosumers in the beginning stages.

 

2. Publicize successful implementation at major stages along the way.

 

3. Evaluate progress and make necessary changes as needed to assure the intent of the prosumer approach continues.

 

SUMMARY:

 After studying the multidisciplinary literature on knowledge production and use, I have concluded that what is needed to improve knowledge utilization efforts in the rehabilitation field is not a new strategy, technique, or tool. What is needed is a perceptual shift, a change in the paradigm within which all knowlege utilization efforts have been grounded. Consumers are better informed, more independent, more supported by peers, and more skilled in identifying the strengths and weaknesses of current systems. They seek empowerment; with that power comes responsibility. Now is the time for NIDRR to channel that desire for empowerment into a partnership in knowledge production and use. By fostering shared responsibility for knowledge creation and use among consumers, practitioners, and rehabilitation scientists, all prosumers under NIDRR's leadership can more effectively make a difference in the life quality of millions of people with disabilities. Rehabilitation research scientists alone cannot produce sufficient timely disability and rehabilitation knowledge to significantly improve the quality of life of all people with disabilities. Gaps in scientific knowledge exist that scientists cannot fill partly because of low levels of funding, partly because of insufficient personpower, and partly because of the nature of the knowledge gaps. Personpower can be increased by promoting responsibility for knowledge production and use by service providers and disability groups as well as by scientists. The nature of the knowledge missing can be provided by involvement of all parties as equal partners in knowledge production and use.

 

Scientists know scientific methods; people with disabilities know about their disability and its effects on functioning. Practitioners know rehabilitation techniques and practices; policymakers know the politics and structures involved in resource allocation and priority setting. Each group has a contribution to make and each group needs an equal voice (i.e., power and control) in the resource allocation and research priority setting process to assure knowledge produced by prosumers is used. As implementation of the prosumer approach begins, knowledge production and use join like the two-sided Roman god Janus at the beginning of an exciting new era. To keep the status quo is to keep the limits dictated by the two-communities mind set. It is time to change the paradigm. Then, and only then, when knowledge production and use become integrated by prosumers, can significant change in utilization efforts result.  

Chapter 7