Independent Living Research Utilization
Proposal for a Disability Research Information CenterBoth the Research and Training Center on Independent and Living (RTC/IL) at the University of Kansas and the Independent Living Research Utilization (ILRU) Center at The Institute for Rehabilitation Research have combined their substantial independent living (IL) background, recognized leadership, network connections, and intervention products to design a research demonstration, dissemination, and utilization center, the Disability Research Information Center (DRIC). The philosophical foundation for the DRIC is based on consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, non-dependency services, and consumer leadership. Many of these philosophical concepts have been pioneered or refined by leaders at both collaborating centers. A broad target population and impacts for population subgroups have been specified. The target population groups include:
Overall anticipated impacts include:
An operation model (center blueprint) is used to take defined inputs (disability research information knowledge base and consumer knowledge) and use them for particular center projects to achieve the specified impacts on the target population. Research project R-1 extensively involves consumers in identifying disability research information needs and barriers to accessing research. R-2 is a research and development project whose goal is to develop a research primer which will be used to assist the first two target populations to better understand research, how they can use it, and how they can influence it. R-3 is a longitudinal study specifically designed to use NCDDR consumer survey information and RTC/IL and survey information to identify valid variables to evaluate dissemination and utilization, and then to conduct annual surveys to identify dissemination and utilization trends, and to produce a final report. The NCDDR will work with theR-3 project team. Demonstration, dissemination, and utilization project D-1 will use the most current technology to develop an interactive and searchable database that includes disability information that is easy to understand, and that helps to reduce related barriers identified in R-1. D-2 is designed to develop and test a multitude of technical and conventional strategies and methods that will facilitate use of the D-1 database, stimulate research access, and provide needs and barrier information to policy makers and barrier reduction information to researchers. D-2 will also use existing systems on the Internet and DIMENET to create an effective disability research information infrastructure. D-3 involves a demonstration and applied intervention to provide donated computers and equipment to consumers and also to provide them with donated Internet access from the Better Business Bureau and other sources. Two technical assistance projects will disseminate knowledge and products from all of the research and demonstration, dissemination, and utilization projects. Conventional and modern technical methods will be used. Because all projects involve the development of user manuals, a large amount of technical assistance will be provided by phone by those who developed them. T-1 is aimed at consumers, family members, and practitioners who use the DRIC database, chat rooms, donated equipment, listservs, and other options from D-1, D-2, and D-3. Practitioners or advocates who wish to provide technical assistance will also be trained. Technical support will be provided to policy makers concerning needs, barriers, and other reports. T-2 will provide assistance to researchers, including technical assistance in developing research reports for consumers, family members and practitioners involving consumers in their research, and using options such as chat rooms to discuss research issues with consumers. The DRIC project is a joint collaboration between the RTC/IL at the University of Kansas and ILRU at The Institute for Rehabilitation Research in Houston, Texas. The Total Quality Management teams (TQM) are used across both teams to conduct projects, provide center guidance, and manage the DRIC. Each project includes staff and consumer consultants from both centers who use their talents for specific tasks. Each project's staff constitute a project team. Lex Frieden, Glen White, Ken Golden, Laurel Richards, and Jim Budde constitute the Senior Management Team. Frieden and White ensure consumer participation, as well as the quality and usefulness of project products. White serves as research director, Richards as technical assistance/training director, and Golden as information systems manager. Budde will coordinate all grants management functions within the universities and through NI on Disability, monitor the progress of all projects, and provide management information for the Senior Management Team. A number of IL, dissemination and utilization, research, business, advocacy, and other prominent leaders comprise the National Advisory Committee. They will regularly review DRIC progress, development of all products, and will provide linkages for further collaboration. Introduction Many consumers with disabilities, as well as their families, rarely make use of the knowledge that comes from the research about their lives. They are the ones who experience disabilities, but they often have little or no input into the design or direction of the research that studies them. They often feel most research does not concern them or their issues. In a 1998 letter to President Clinton, Marca Bristo, chairperson of the National Council on Disability made these comments: "People with disabilities have learned "that underlying values and assumptions have guided research in ways that are not necessarily important or helpful to them" She goes on to note that "disability is a natural part of the human experience" and that "people with disabilities should participate in the production and consumption of research about them." People with disabilities are not the only ones who make limited use of research. Centers for Independent Living (CIL) may have some access to research results, but they could have even more. Like consumers, CILs also have little to no input in setting research agendas. In general, most consumers, CILs, State Independent Living Councils (SILC) and other Independent Living Programs (ILP) place a low priority on research. They prefer to focus on service and advocacy and often fail to see how research relates to these concerns. What prompts these various groups to make so little use of research? Here are some possible answers: 1) Consumers believe that little useful research may be done in independent living; 2) As most often written, research results are hard for lay people to understand; 3) Those who might want to read the research have trouble finding it, unless they are knowledgeable of the Internet or can find or afford professional research journals. 4) Finally, many lay people do not really understand how research can enhance service and advocacyùthe two issues most important to consumers and independent living organizations. None of these answers mean that consumers and independent living organizations may not find research useful. They only suggest that these groups do not yet see how they might make use of research (Brandt & Pope, 1997). In fact, in 1997, the National Council on Independent Living (NCIL) stated its support for research. The NCIL represents a national network of independent living centers and their consumers. Its membership includes advocates, researchers, practitioners, related organizations, and consumers. The support from NCIL for readable and useful research is noteworthy. In its "Position on the Reauthorization of the Rehabilitation Act of 1973 as Amended," the NCIL clearly supports disability research. NCIL encourages a search for new ways to disburse data to a broad audience. This audience includes consumers with specific impairments and those from diverse cultures. It also encourages making the formats, language, and distribution of information more effective. The NCIL document calls for a "variety of diverse mediums." The NCIL paper makes a special example of the meaningful role the National Institute on Disability and Rehabilitation Research (NI on Disability) can play. Under Section 202 (b)(9) of the Reauthorization of the Rehabilitation Act, the NI on Disability is charged with conducting research on consumers' satisfaction with the vocational and rehabilitative research services they receive. Without question, says the NCIL, the NI on Disability's efforts in this area would benefit the 50-plus state rehabilitation advisory councils. But NCIL notes that the NI on Disability's efforts to widely disseminate research findings and educational materials to educators, practitioners, consumers, their families, and advocates, are not "entirely successful." Materials that are hard to read and are limited in access contribute to that lack of success. Under Section 202 (b) (9) of the Reauthorization of the Rehabilitation Act, the National Institute of Disability and Rehabilitation Research (NI on Disability) has the responsibility for conducting research concerning consumer satisfaction with vocational rehabilitation research services. NCIL feels this is an example of how important research findings could be widely disseminated to all audiences using innovative methods. The NCIL states, "without question, the 50-plus state rehabilitation advisory councils (RACs) in the nation would benefit from having findings from NI on Disability's efforts in this area." The need is delineated as dissemination of "communication-friendly" findings and technical assistance to conduct studies. The paper calls for wider, more effective, and more accessible methods that are targeted to specific populations, as well as clear planning and assurances for carrying out the plan. Additionally, the NCIL paper addresses the important role that consumers, family members, CILs, and related IL organizations can play in guiding research agendas and subsequent research. They know their needs best, are in a position to translate their needs for agendas, are in an optimum position to provide valuable information, and desire to participate. Evidence suggests that consumers of CILs might see research as useful. Seventy-two percent of consumers said disability research information was useful (NCDDR, 1997). Twenty percent reported they did not know and only 8% answered that it was not useful. It should be noted however, that "research information" was not defined for the survey respondents. Also it is unlikely many CIL consumers with low-incomes use research journals. So the answers might be attributed more to opinion than experience. In the NCDDR study, popular media, including television and radios (76%) and print media (73%) were the most common means of acquiring useful information. Computers, electronic mail, and the Internet received a much lower rating (27%). (Respondents were asked to check all categories used.) The Internet promises to be one of the greatest vehicles to effectively retrieving disability research information. It could also be the most economical vehicle. Emerging technologies through cable television (Web TV) could also prove useful. The NCDDR respondents' use of electronic mail and the Internet are not surprising in that these are less common among consumers served by CILs. Print, television, and radio likely will be most useful to both disseminate research information and stimulate use of other mediums, such as the Internet. Because consumers prefer print, television, radio, and similar media does not mean these are the most effective or economical media. These media are not interactive or searchable. Further study is needed to find effective and economical strategies, methods, and media that can be used to disseminate IL-related research information and give broad access. In other words, the question is not what consumers use, but what can they use effectively through intervention. In the NCDDR study, consumers preferred regular print (66%) to computer discs and on-line service, rated respectively at 25% and 26%. When consumers were asked if they received information from the Internet, over 50% reported never using the Internet and 25% reported using the Internet, often or very often. For the Internet and electronic mail to be used effectively, a new infrastructure will need to be created that meets consumers' needs and reduces barriers. This infrastructure would give access to relevant and understandable information. Consumers will also need help to acquire computer hardware and to receive related training. CILs and related service organizations might use the infrastructure to get needed information for consumers in printed reports or disseminate new information through print and popular media. he NCDDR study reveled that almost half of the consumers (48%) reported they knew how to find information from disability research. Again, this data calls into question what consumers perceived as "disability research" information. Low-income consumers who use popular and print media as their main source of information would not appear to be those who would use research journals. Additional study is needed to identify the kinds of information consumers obtain and utilize, what constitutes understandable and jargon-free language, and what barriers exist to obtaining disability research information. In addition, valid variables need to be identified to measure research dissemination and utilization rates and related trends. The Problem While NIDDR has used its influence to promote the use of PAR and while trends in the field have been to involve consumers, family members, CILs, and related IL organizations as partners in research and dissemination, there is much that remains to be accomplished. Common problems are identified in the NCIL paper, current surveys, and the Secretary's Priority 5. One of the key challenges is translating research information so that it can be easily used in the IL field and in the everyday lives of consumers (Brandt & Pope, 1997). Assistance is needed from researchers to produce their research results in an understandable form that can be readily used as well as in the standard terminology and formats that are necessary for publication in professional journals. Another problem is that of establishing an effective, searchable and interactive, disability research information database. There is a need for this database to access and discuss IL information, and to generate new research. With the use of resources such as the Internet, DIMENET, cable television, the telephone, and various media sources there are ample communication systems in existence. Innovative strategies and methods such as world-wide web pages, e-mail, chat rooms, interactive conferences, cable web TV, use of information brokers, and other innovations need to be developed and tested. The strategies and methods would be used for specific dissemination, discussion, agenda setting, and knowledge diffusion and exchange purposes. What is required is a research information dissemination and utilization system, or subsystems, that make effective use of existing information systems. Independent living research information exists in a variety of sources, but it has not been cataloged in an interactive, user-friendly database that uses language understandable by consumers, family members, and CIL, SILC and ILP staff. In order to develop the disability research information system, disability research database, and related products, it is critical that consumer and family member needs, as well as CIL and related agency needs, be identified. It is also important that they be involved in the design process. Needs information is necessary to develop and prioritize development and testing of the database and other system components. Specific needs should be identified within Disability research categories such as benefits advocacy, transportation, personal assistance, low-income housing, and accessibility. In addition, the individuals involved in the process are likely to help identify innovative strategies and methods. They can contribute to the identification of barriers to obtaining current research information, and potential strategies and methods to overcome those barriers. Even with a new disability research information system with a user-friendly database containing understandable information, there is no guarantee that it will be used. Additional strategies and methods will be required to encourage utilization. For example, not all consumers will have access to the disability research information. Strategies and methods could involve donation of recycled computers and information brokers who use the disability research information database and system to obtain information that consumers request. A variety of strategies and methods based on need should be refined, tested, and developed into products and packages. The products and packages could then be used by consumers, family members, advocates, CILs, SILCs and ILPs with assurance that they are effective for accessing relevant disability research information. The disability research dissemination system, however, would not be effective in delivering needed information to the target population unless it is effectively implemented. This would require the use of technical assistance and user training to operate the system and system components. This effort should clearly be national in scope. One of the key ingredients for success would be consumer knowledge and willingness to work and collaborate in a disability research information demonstration, dissemination, and utilization effort. It would be desirable for researchers to use PAR to provide information that is understandable, and to help communicate their findings to consumer end-users (Brandt & Pope, 1997). Conversely, it would be desirable for consumers, family members, and staff from CILs, SILCs, and ILPs, to understand how research can be applied to their needs and how to participate in it, and also to learn about realistic expectations of research. Project Goals: The overall goal of this proposed DRRP is to establish a Disability Research Information Center (DRIC) that will enable consumers, family members, CILs, SILCs, ILPs, and related service agencies to use relevant research information to advance the field of independent living, and to meet the independent living needs of consumers and their families. The overall goal of this Center will be accomplished through several activities. These include: a) careful selection of target population groups, b) development of a survey tool to detect dissemination and utilization trends, c) use of the Consumer Concerns Report Method, d) development of a user-friendly research database, e) creation of an information infrastructure to carry the research database, f) facilitating database availability to consumers through donated computers and free or low-cost Internet access, g) technical assistance to ensure that disability and IL related information is disseminated and used by the target audiences it is directed towards, and h) National Advisory Committee involvement to help provide strategic direction for this proposed Disability and Rehabilitation Research Project. Each of these activities will be discussed in more detail below: 1. Target Population Groups. Review and refinement of the proposed target population groups include 1) consumers and family members, 2) Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), Independent Living Programs (ILPs), and related IL service personnel, 3) policy makers involved with research that might facilitate IL, and 4) NI on Disability and other researchers conducting studies that might facilitate independent living. This will be accomplished with the direct involvement of IL leaders, practitioners, policy makers, and researchers. 2. Survey Tool. Development of a survey tool to identify valid variables that measure research dissemination and utilization. These variables will be used in an annual survey to evaluate disability information dissemination and utilization rates and trends over a four-year period. These results will be reported to identified target populations. 3. Use of Consumer Concerns Report Method. Involvement of consumers in the development, implementation, and application of surveys and focus groups to identify, prioritize, and discuss research information that promotes independent living, and identifies barriers to obtaining this information. The Consumer Concerns Report Method (CCRM) will be used to accomplish this activity, and the results will be reported to the target population and also used to guide subsequent center projects. Additionally, the CCRM results will be provided to NI on Disability and OSERS to assist in setting new research, dissemination and training priorities. 4. Database. Development, testing, and maintenance of a searchable and interactive database using disability information needs and barriers to accessing information. The database will be refined through consumer feedback and will include relevant and understandable information that will be used by the target population to enhance independent living. 5. Information Infrastructure. Development and testing of intervention products and packages that can be used effectively to implement and maintain a disability research information system based on the Internet, DIMENET, cable television, and other existing systems. These products and packages will comprise a new infrastructure to effectively disseminate disability research information to the target population, and will be developed using disability information needs and barriers to accessing information, innovative ideas, and direct consumer involvement. 6. Computer Access. Development of an intervention package that provides consumers and their family members with donated computers, and on-line access time and training that will facilitate their use of the Internet to access the Center's database and other resources. The intervention will utilize existing computer recycling projects and donated Internet time. 7. Technical Assistance. Provision of technical assistance that will facilitate consumer and family member use of the infrastructure that has been created using products developed for the Disability research information system, as well as an interactive searchable database. This activity will, at the same time, enhance NI on Disability projects and priorities, consumer publications, and the clarity of information from researchers and its dissemination to the specified target populations. 8. National Advisory Committee. Development of a National Advisory Team, including IL leaders, consumers, and family members, that will facilitate strategic center guidance and maximize project outcomes. Goals will be addressed in collaboration with the NCDDR and be in harmony with the IL philosophies and concepts of consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, and strategic consumer leadership. Major Collaboration A Disability Research Information Center (DRIC) is proposed as a joint venture by the Research and Training Center on Independent Living at the University of Kansas in Lawrence, Kansas and the Independent Living Research Utilization Center at The Institute for Rehabilitation Research in Houston, Texas. Both Centers have a long and rich history involving disability research, training, technical assistance, dissemination and utilization, and integral consumer participation, some of which dates back to the 1970s. Both centers are also steeped in the philosophy of independent living involving consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, and strategic consumer leadership. Directors and staff not only apply the philosophy routinely, but many have served to pioneer or enhance the philosophy. Both centers bring a wealth of independent living intervention products, dissemination and utilization knowledge, and independent living background, including a combination of 75 years of experience. Both centers employ seasoned and recognized directors and staff . The above background, history, talents, products, and experience has been concentrated on the design of an effective Disability Rehabilitation Research Project (DRRP) for independent living research information demonstration, dissemination, and utilization. Both the RTC/IL and ILRU have a combined total of over 75 years of research and dissemination experience. The RTC/IL has disseminated over one million IL products through a variety of methods from direct mail to the Internet. Home pages display over 50 clearly-described Disability research and IL intervention products. While research is published in professional journals, intervention products are disseminated directly to consumers, family members, and service providers in accessible formats and through a variety of mediums--including e-mail, print, videotape, braille, audiotape, and computer disks with ASCII text. ILRU has developed and maintained a current extensive mailing list of consumers, consumer leaders, CILs, and IL organizations. This mailing list is used for a variety of purposes from research to information and product dissemination. Two key publications are sent to subsets of the target population on the mailing list. The newsletter, "Insights," contains a variety of IL information (including research information). The publication, "Staying on Track," deals with CIL management issues. ILRU was an early adopter of the Internet and DIMENET. These systems were not only adopted to disseminate Disability research and other information, but to study the utility for the systems in enhancing the IL field. ILRU also provides materials in the same alternate formats as RTC/IL, and, in addition, uses a variety of mass media innovative strategies. Three broad, but distinct, target population groups have been identified. Strategic research, demonstration, dissemination, and utilization impacts have been planned for each of the three groups. These three target population groups include
Each of these populations will be briefly described below: Consumers and Family Members. The consumer target population involves all individuals with disabilities. The term "family members" is used in a broad sense to define this subset of the target population. Family does not include just immediate family members, but friends, personal assistants, and advocates who play an active role in assisting or encouraging consumers to achieve their independent living goals. Consumers and family members are considered the ultimate target group of the Center's activities. All Center products, databases, strategies, technical assistance, and research will be geared to improve both information service and information flow to consumers and family members. CILs, SILCs, ILPs, and Related Organizations. The second target population includes CILs, SILCs, and other IL organizations that could serve as research information brokers and also users of disability research information. While this target population group would assist consumers to obtain disability research information, they would also use the information to enhance services and planning. There are approximately 400 CILs and independent living and related programs and services in the U.S., and a SILC for each of the 50 states and U.S. territories. In addition to the CILs, ILPs, and SILCs, other target populations who might benefit from this DRIC include Disability Business Technical Assistance Centers (DBTACS), State Assistive Technology projects, Regional Rehabilitation Continuing Education Programs, and Rehabilitation Information Exchange projects. Policy Makers and Researchers. The third target group includes policy makers at federal, state, regional, and local levels, and researchers who are involved with research related to disability, rehabilitation, and independent living. One of the goals of this Center is to provide consumer-identified research priorities that shall address disability, IL, and rehabilitation research. Additionally, consumers will clearly identify barriers to obtaining and using research information to help persons with disabilities live more independently. Information about these barriers and needs will be provided to policy makers in The Office of Special Education and Rehabilitation Services (OSERS) with primary feedback going to NI on Disability to assist with future research priorities. Information will also be provided to the National Council on Disability (NCD). The Center will also make recommendations to NI on Disability which would help NI on Disability researchers to make their research information more accessible and usable by CILs and consumers with varying disabilities. The project will also work to communicate project findings to scientists who are conducting research for other federal and private agencies, that share some of the same goals as NI on Disability (e.g., NCMRR, CDC, Veterans Administration, Paralyzed Veterans of America). RESEARCH OVERVIEW Research Activities The Center considers research to be an integral part of its overall mission. The three research projects provide a strong triad in helping to establish, shape, and monitor the Center's activities. These projects provide a dynamic relationship in informing the manner and content in which the dissemination and training projects will be developed. Two of the three research projects involve national surveys while the other project aims to develop a research primer to aid consumers and their family members to better understand the basic taxonomy and concepts of research. A thumbnail sketch of these research projects will be described below in an annotation format. R-1 Consumer Concerns Report Needs Assessment: Identifying Disability research Needs and Barriers. This project is designed specifically to meet the Secretary's Priority 5 requirements 2 ("Identify the barriers to increased use of research information by persons with disabilities.") and 3 ("Based on the input of persons with disabilities, identify research that promotes independent living."). Research project R-1 will involve consumers developing a Consumer Concerns Report Method survey that will be developed and distributed to approximately 3,000 participants across the US. This survey method was chosen due to its priority in receiving consumer input. CCRM promotes the use of consumers being a central component in developing the survey, reviewing the survey results, and helping to prioritize research information, and identifying innovative solutions to make IL-related research more accessible to consumers with disabilities. ( R-2 Research Primer Development and Evaluation for consumers with Disabilities who have Limited Experience with Research. Research project R-2 is designed specifically to enable consumers to build their capacity to understand and, at a rudimentary level, use research to facilitate independent living. A user-friendly "research primer" will be developed and tested for this purpose. While some of the Center projects seek to make the research information more accessible and useable for consumers, this proposed project seeks to help consumers better understand some of the basics of research-including the terminology used, the types of designs used, and tips on how to read research studies. While there is no specific priority requirement for this project, it has been included based on the need to better involve consumers and remove barriers that might result from understanding IL-related research. The project relates to the second and fifth requirements under this proposed priority: "Identify the barriers to increased use of research information by persons with disabilities;" and "Develop and disseminate strategies that other information providers, such as CILs, NI on Disability-funded grantees, and consumer publications, can use to increase the utilization of research to promote independent living, and provide technical assistance to those entities to increase the dissemination and utilization of this information." R-3 Longitudinal Study of Independent Living Research Information
Using the NCDDR Study as Baseline. R-3 will be used to evaluate
dissemination and utilization needs and trends of the three target
population groups described above. This project is designed to meet
the #1 requirement of the Secretary's Priority 5, "Using the NCDDR
survey results as baseline information, further assess the use of
research information to promote independent living." Demonstration, Dissemination, and Utilization Activities. The Center considers dissemination and utilization of information as a critical part of its overall mission. Demonstration, dissemination, and utilization projects, which are part of the DRIC's project portfolio, will be discussed below. Thumbnail sketches will be presented for D-1 "Disability Research Dissemination Database," D-2 "Disability Interactive Resource Website and Information Service," and D-3 "Stimulating Use of Research Facts on the Internet." The first demonstration, dissemination, and utilization project, D-1 (D1-Developing and Maintaining an Interactive Disability research Information Database to Facilitate Use and Understanding) is designed specifically to integrate priority Disability research information into one central database. This database will include abstracts of research that are written in language that is understandable to consumers, family members, and practitioners and can be accessed through the World Wide Web. The database will be developed according to the disability research information priorities identified in R-1 and the National Advisory Committee. Barrier information from R-1 will also be used to design a user-friendly, interactive, and searchable database. The database will serve as the core resource and depository for disability research information. This searchable and interactive database on the WWW will be organized by IL categories. Users of the system will be able to provide feedback on both the research information and utility of the database. DRIC will summarize the feedback and relay it to researchers and policy makers. This database will be accessible in compliance with Web Accessibility Initiative (WAI) guidelines. Project D-2 (Disability Interactive Resource Website and Information Service - DIRWIS) is a comprehensive project that involves the use of a variety of strategy options, information systems, and technology to promote use of Disability research information. Strategies are linked to D-1 and include options such as chat rooms, news groups and listservs, virtual library on IL, and cable-based web television. Strategies also include the use of brokers and popular and print media to both share information, and provide a link to the disability research information database developed through D-1. The project will also link NARIC, NCDRR, and other existing information databases to the website to create a new infrastructure. The DIRWIS will be in place beyond the life of this project grant through dedicated network space and through incorporation of these activities in future projects. Project D-2 is also designed to develop and test effective strategies for providing consumers' research priorities and information to policy makers and researchers. One strategy would be to use executive briefs to enable policy makers to improve research policy, agendas, and allocation of funding. Another strategy would be to make disability research information, research priorities, and barrier information available to researchers to refine their research and dissemination and utilization strategies and procedures. This information would be disseminated at conferences such as NARRTC. In particular, the format and methods from D-1, to develop understandable and usable information through abstracts, would be included in a package for researchers. This project is designed also to meet the Secretary's Priority 5 requirements 4, 5, and 6. Project D-3 "Stimulating Use of Research Facts on the Internet," is designed specifically to acquire and place donated computer and information system hardware in the hands of consumers and family members. A number of CILs have programs to recycle donated equipment and give it to consumers and family members. Independence, Incorporated in Lawrence, Kansas is an example of one such program and has operated a donation and recycle program for several years which not only provides consumers and family members with equipment, but also provides the capability to access systems that enhance their independent living. Project D-3 has three goals. The first goal is designed to provide computer equipment to consumers and family members unable to purchase this hardware. The second goal is to provide training to use the hardware. The third goal is to acquire donated Internet time through the Better Business Bureau and other organizations that consumers and family members can use to access disability research and other information. Project D-3 is also a demonstration project which evaluates this innovative strategy and develops procedures that other CILs and related IL organizations can use and replicate. This project is designed to meet the Secretary's Priority 5 requirements 4, 5, and 6. Technical Assistance. Project T-1, "Making Disability Research Information Accessible to Consumers, Family Members, Centers, Other Service Providers, and Advocates," is designed to provide a wide variety of technical assistance to the first two target population groups of consumers, family members, CILs, SILCs, and ILPs. Products, developed in D-1 and D-2 such as the new disability research information database and information system options, will be used as the basis for technical assistance. Two types of technical assistance will be provided. First, technical assistance, in conjunction with the D-2 dissemination options will be provided to train consumers to use the database and information system options, and to operate a computer recycling program. This training will be directed toward the first two target population groups who have less access to computer training. Second, technical assistance will be provided to CILs, ILPs, related IL services, and consumer organizations to train consumers to use the database, information system options, computer recycling program, and information broker services. Operator manuals and similar products will be developed and used for both types of technical assistance. These technical assistance approaches will enable consumers, CIL, and SILC staff access to disability research information and help them assist others to use the database and system options. Technical assistance to users will be provided by phone in the same way that software companies provide technical assistance to their customers. A directory of technical assistance providers will be included with each product. Project T-2, "Providing a Wide Range of Technical Assistance to the Target population to Facilitate Use of All Disability research Information Components," is designed to assist researchers to enhance the social validity of their research. Information and products such as D-1 abstracting or R-1 Disability research information needs and barriers information, will be used to provide technical assistance that will promote consumer-users' better understanding of researchers' findings. Information will also be provided to policy makers in much the same way. In addition to the telephone, demonstration and technical assistance will be provided on-site at regional and national conferences. Beneficial Impact on the Target Population The overall impacts on the target populations are as follows: 1. Consumers are able to access and utilize research information relevant to their needs as well as consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, and non-dependency creating services. Increases in the frequency of information that consumers both access and use will serve as the key measure of impact. 2. The overall impact on CILs, SILCs, and ILPs will be their additional capacity to: a) access and use disability research information for their organizational needs, and b) assist consumers to access disability research information. In effect, the impact will allow location and use of disability research information and system and infrastructure to obtain and utilize research information that benefits consumers, CILs, policy makers, and researchers. The frequency of searches and information use in providing consumers and the other target groups with disability research information will be a central impact measure. These will be measured by the number of daily hits and the variety of IP addresses assessing the home pages. Further, the number of information requests via home page e-mail will also be cataloged. 3. The overall impact on policy makers will be the allocation of research based on consumer-identified research priorities resulting from the Center's consumer participatory influenced work and products. In other words, legislation and funding priorities will more accurately reflect the needs of consumers. Similarly, the type of research that researchers conduct will more accurately reflect consumer needs. Researchers will also disseminate their findings in language and formats that can easily be used by consumers specifically in arenas outside of professional journals. Thus, the planned impact for this population will include 1) comparisons of Disability research agendas with consumer priorities, 2) reduction of information barriers with consumer-identified priorities, 3) research funding allocation directly related to consumer priorities, 4) potential increases in field-initiated research priorities that are related to consumer-identified priorities, and 5) the quality of research information that is accessible and understandable for consumers. Impacts on all three target populations will be tracked through R-3, involving the longitudinal study of research dissemination and utilization and also the Center's evaluation system. UTILIZATION ACTIVITIES DESIGN The extent to which potential new users of the information have a practical use for that information will be assured by the various mechanisms for determining subject matter of the database and prioritization of the issues. Principally, they include using the Consumer Concerns Report Method, conducting focus groups with consumers and representatives of independent living centers, making tallies of inquiries made on the website, and collecting data from the online survey incorporated into the website. The likelihood that users will actually adopt practices for utilized information obtained through the center is very high for three very important reasons. First, the information which will be made available in the database will be determined by input from consumers. Second, the utility of the information deposited in and available for withdrawal from the database will be validated and tested by consumers. Third, unlike some libraries or resource centers where information is given with no interpretation or support, the disability research information center will support information given to consumers through a variety of means:
Together, these and other forms of support for consumers will ensure that the information obtained by users can be understood and used appropriately. EVALUATION PLAN In order to determine the quality and usefulness of the disability interactive resource website and information service, data on usage by different target groups will be gathered and summarized. Monthly statistical reports will be created from the website to track and profile the number of contacts for each topic area. Interactive surveys and e-mail evaluation forms will be placed on the website, encouraging users to evaluate the service and to make recommendations for improvements and additional features. Additionally, the online survey described above will provide center staff with another source of information about relevant consumer information needs and priorities. CONTINUATION OF PROJECT BEYOND GRANT CYCLE The final objective for this project is to sustain activity beyond the period of this grant. After the initial start-up costs, the use of electronic communication tools for dissemination of information can be maintained at a relatively low cost. As e-mail and Internet capabilities become increasingly available to businesses, service organizations, advocacy groups, and consumers in their homes, they will provide a cost-effective means of delivering information on a range of topics. Collaboration with clearinghouses, research and training centers and other information utilization and research organizations will be an important part of the collection and dissemination of information for this project. The sharing of information with NARIC, other information clearinghouses, and information services of other RTCs, and NI on Disability-sponsored programs will be on-going and will help to assure that information and other products generated through project activities will be available beyond the period of grant funding. D-2 Timeline HERE D-3: Stimulating Use of Research Facts on the Internet (or SURFIN' USA) ABSTRACT: This demonstration project will assist persons with disabilities to increase their use of information technologies such as the Internet by providing them with equipment, skills, and free or affordable Internet connections. The project also will enhance the capacity of Centers for Independent Living (CIL) to assist persons with disabilities to access information technologies by providing CILs with the information and resources needed to establish computer recycling and Internet connectivity programs. PERSONNEL: Name and Degree Position % Time Lex Frieden, M.A. Co-Director/P.I. 6% PROJECT TIME FRAME: 5 years RESPONSIVENESS TO A PRIORITY: Secretary's Priority 5, Requirement (6): Develop and implement strategies to assist persons with disabilities to increase their use of existing and future information technologies such as the Internet. This project addresses research information that people with disabilities can use to make a difference in their daily lives and their ability to access that information. Whereas D1 is designed to gather and process research information and convert it to a format which consumers and other non-researchers can understand and use, and whereas D2 provides that information through gateways or doors on the Internet and through other mechanisms, D3 will provide people with disabilities with the hardware, software, Internet connection, and skills they need to be able to benefit from those resources. This project will help build an infrastructure that will enable people with disabilities to use existing and emerging information technologies. Consumers will have the capacity to acquire information that enhances their ability to live independently. Providing consumers with the equipment and skills required to access information on the Internet and giving CILs the means to assist consumers in acquiring needed equipment and skills will, as stated in the background information of the RFP, "maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities." TARGET POPULATION: The target populations of this project include consumers, CIL staff, and other information brokers as described above. BACKGROUND: The background information section of the RFP states, "The Internet is a primary medium for the dissemination of disability information. The Internet allows this information to be available to persons with disabilities in daily life settings, rather than requiring travel to workshops and conferences." As noted by the Department of Education in the current Request for Proposals, the Internet can be a powerful tool, particularly for persons with disabilities, providing them with access to information which they might not otherwise be able to obtain because of barriers such as distance, inaccessible formats, transportation, and architectural limitations. However, the results of a survey study conducted by the National Center for the Dissemination of Disability Research (NCDDR) indicated that 50% of the persons with disabilities surveyed had never used the Internet to obtain information. While the NCDDR survey indicated that most people with disabilities are not taking advantage of the information available on the Internet, the reason is not clear. Information received directly from consumers and staff of CILs suggests that one of the primary reasons for the underutilization of the Internet as an information resource is due to a lack of access to computers. While the RFP notes that "many institutions, such as public libraries, churches, or places other than employment or educational sites are increasingly providing alternate points of free access, consumers' abilities to take advantage of these opportunities are limited. Transportation, architectural barriers, and living in rural areas can prevent persons with disabilities from gaining access to the places that provide free use of computer equipment. The hardware and software provided often do not include accommodations for users with physical or sensory disabilities. Developing computer skills requires practice, but practice requires access to a computer. It is difficult for persons to develop those skills when they are limited in the amount of time they are able to use the computer, as many public institutions, such as libraries, allow each user only 15 to 30 minutes each day. When individuals have their own equipment, barriers such as transportation, inaccessible buildings, time schedules are eliminated. Owning a computer provides the opportunity for a person with a disability to practice and develop the skills needed to be competent in the use of computers. It also grants the person with a disability control over when and how often he or she may access information on the Internet. Other options for accessing information on the Internet, such as WebTV have recently become available to the private sector. Using a WebTV connection, people are able to access the Internet without the use of computers. Experts predict that other low-cost avenues for accessing the Internet using "set-top" boxes will be available in the very near future. These new technologies provide options to the user who may not have an interest in having and using a computer but would still like to have access to the information available through the Internet. It should be noted that these alternative Internet access options still require specialized equipment and monthly access payments to an Internet service provider (ISP). However, they do expand the range of options available to people wishing to access the Internet. Access to the Internet, whether through the use of a computer or WebTV, involves specialized and expensive equipment, as well as monthly fees to an Internet service provider. Cost has been a major barrier, often preventing people with disabilities from gaining access to this information technology. The National Council on Disability's 1996 publication, Achieving Independence, cites numerous references supporting the finding that, as a group, people with disabilities are more often unemployed or underemployed and poor, as compared to those without a disability. "People with disabilities are poorer than people without disabilities. In January 1995, 30% of people with work disabilities had incomes below the poverty level, compared with 10.2% of the working-age population without work disabilities. Of those with severe work disabilities, 35.8% had incomes below the poverty level (LaPlante et al. 1996)" (pp. 15)." "While the average family income for all families in 1995 was $46,478, it was only $28,067 for families of people with disabilities. Among families with disabilities, those who were White had an average family income of $30,216, while those who were minorities had an average family income of $20,587 (Yelin 1996)" (pp. 15). "People with disabilities are twice as likely as people without disabilities to be unemployed. In 1995, 10.1 percent of the population aged 16-64, or 16.9 million people, had a work disability. Of these, 11.4 million had a severe work limitation and were not participating in the labor force, with a cost to society of about $150 billion (LaPlante 1995)." (pp.16) National Council on Disability 1996b CILs are looking for ways to overcome these economic barriers by providing hardware, software, and Internet connections for persons with disabilities. ILRU recently conducted a national teleconference training program on using the Internet to enhance advocacy efforts. Staff and consumers of CILs asked the presenters and other participants for information on how to provide computer equipment and connectivity to persons with disabilities at a reduced or no cost. Many of the comments on the evaluation forms for the training highlighted the importance of this issue. Once persons with disabilities are connected to the Internet, they can begin to access the vast amount of information available, including local, national and international news, legislation, job postings, and most importantly for the purpose of this project, research information which may help them reach goals of independent living. Information available on the Internet is constantly updated, so rapidly, in fact, that traditional information sources, such as television and print media--sources preferred by consumers in the NCDDR survey--cannot keep up. In an age when information is a commodity, persons with disabilities will become more disenfranchised without access to information and services available on the Internet. The report, Access to the Information Highway and Emerging Information Technologies by People with Disabilities, published by the National Council on Disability in September 1996, notes the following: "NII [National Information Infrastructure] has the potential to level the playing field in many areas of life, but it can also pose new barriers. . . .For people with disabilities, NII provides all the advantages provided to everyone else, plus some special ones." The special advantages include the following: Drastically increasing the ability of individuals with some types of disabilities (including visual, hearing, physical, and cognitive/language impairments) to access and use information. Decreasing the personal isolation that individuals experience because of restrictions in their ability to move about, communicate, or get together with others sharing their interests or situation. Allowing individuals to interact with others in a way that makes their disability invisible or irrelevant. Allowing convenient access to educational and medical services. . . . Anyone who cannot afford or who cannot physically access and use NII will be at a severe disadvantage. Inaccessibility poses a special risk for individuals with disabilities. National Council on Disability, 1996b. Some CILs and other organizations have developed successful computer recycling and Internet connection programs which may be replicated in other centers. During an ILRU focus group at the National Conference on Independent Living in May 1998, one CIL staff member described her center's program: "We have a new initiative that we started last year. Given that knowledge is power, our overall mission is to get that information into the hands of the consumer. There's just such great opportunities for people in so many areas if they're able to be connected with the net [Internet]. You can get computers from everybody. We have people with the expertise to fix them up if they're not running, and we're going to get people to come in and help work on this themselves--like the consumers--and we're going to give them the computer. It's not going to belong to the state; it's going to belong to them. We're looking for a little exchange or volunteer hours--there are different things they can do--but we're not just handing them the computer. They're going to feel like they've been a part of this whole process. We're going to hook them up to DIMENET--it's free. We're going to start newsgroups for people in our areas and that's going to solve a lot of problems for people that aren't able to get into the center. We're going to be able to communicate that way. It's going to be a gradual process, but we're hoping that it's really going to take off once it gets going." PROJECT OBJECTIVES: 1. Conduct in-depth assessments using case study methods of selected centers for independent living and other non-profit agencies that have developed successful computer recycling and Internet connectivity programs. 2. Examine data from these assessment activities in light of the implication for centers and non-profit organizations, and develop recommendations about the various components of computer recycling and Internet connectivity programs that appear to be most effective in different situations. 3. Through a partnership with the Better Business Bureau Consumer Education Foundation, involve Better Business Bureau (BBB) members nationwide in recycling and connectivity projects in their communities by linking them with CILs and non-profit organizations that have existing recycling and Internet connectivity programs or to those which may be in the process of developing such programs. 4. Incorporating findings from the analyses of the case studies, develop technical assistance kits which will include step-by-step procedures for conducting computer recycling and Internet connectivity programs. Kits will include information on how to contact businesses and organizations for donations, information on tax benefits for companies donating computers, sample forms and letters, information on how to estimate storage needs, etc. The kits will also include suggestions about peer role-modeling approaches to training, and resources and ideas for refurbishing computers--such as collaborating with local trade schools, colleges, professional groups and BBB members. 5. Evaluate a prototype kit and collaborative approach to a connectivity program by facilitating the establishment of a model program at a CIL. 6. Gather data from the evaluation, including feedback from consumers, consultants, and the Better Business Bureau Consumer Education Foundation in attempt to refine the technical assistance kit. 7. Using the revised kit, conduct demonstration projects at two or three CILs for a period of one year. 8. Utilize information gathered from the demonstrations to refine the technical assistance kits. 9. Gather and evaluate data on demonstration program consumers' use of the Internet to acquire disability research information pertinent to independent living. 10. Measure the impact of the demonstration programs on centers and consumers using surveys with Likert scales. 11. Nationally disseminate refined and packaged technical assistance kits, including information from the evaluations, to CILs and other organizations. PROJECT APPROACH AND METHODS: (i) The extent to which the proposed demonstration activities build on previous research, testing, or practices (3 points). CILs and other non-profit organizations have developed successful programs for recycling donated computer equipment and providing computers to persons with disabilities at little or no cost. While each program is unique to the particular organization and community where it is located, basic procedures, forms, and first steps could be adapted to fit other CILs and related organizations. For the first year of the project, staff will conduct case studies in CILs and other non-profit organizations which have established successful computer recycling and Internet connectivity programs. The following components of these programs will be evaluated to identify successful practices which could be replicated at other centers and organizations: Donations--how are donations solicited? From whom? How are they stored? How are they refurbished? Could centers collaborate with other groups (trade schools, vocational/technical programs, professional associations, computer user groups, BBB, etc.) to get computers refurbished and to assist with Internet connectivity? Distribution--is there a demand for computer equipment among people with disabilities? How did centers evaluate or document demand when deciding to start the program? How are the recipients selected? Do the recipients contribute something in exchange for the computer (volunteer service, payments, etc.)? How do recipients deal with breakdowns that may occur in the future? Where do they obtain technical support? Is software included in the distribution? Are adaptive devices or software included? If not, how do consumers obtain them? Training--how are consumers trained? does the center provide the training? Is it individual, in groups, in a classroom, self-taught? Who is the trainer? What are his/her credentials? Is there a standard curriculum or lesson plan? What is included in the training--basics (turning on the computer, files, etc), programs (word processing, etc), searching the Internet? Is the training provided before or after the consumer receives equipment? Internet access--how do consumers get access to the Internet? What options are available in the community? What are the costs? Are there other costs besides the monthly fee (telephone line, etc.)? How can centers help consumers access the Internet? Will consumers use the Internet to obtain information that increases their independence? Would collaboration with business partners increase opportunities for people with disabilities to access the Internet? In answering these questions, project staff will also be aware of potential correlations between the methods used by the organization and the size and location of the organization. For example, do CILs or other organizations located in areas with a large technology workforce have more resources for refurbishing computers? The results of these program evaluations will form the basis for the development of technical assistance kits which CILs and other organizations can use to set up computer recycling and Internet connectivity programs in own their communities. Using the best components of the programs evaluated, and creating new materials based on the evaluations, project staff will develop technical assistance kits to be distributed to CILs and other organizations who are interested in developing their own program. The model program and technical assistance kits will be based upon procedures developed by persons with disabilities which will promote consideration for accommodations needed by for persons with physical and sensory disabilities. Further, because techniques pioneered by persons with disabilities involved in independent living programs have been proven to be effective, the model program will be consumer controlled. The technical assistance kits will include step-by-step procedures for conducting computer recycling and Internet connectivity programs. These detailed procedures will describe how to contact businesses and organizations for donations, provide information on tax benefits for companies who donate computers, sample forms and letters, and information on how to estimate storage needs. The kits will also include information about peer role-modeling approaches to training and resources and ideas for refurbishing computers--such as collaborating with local trade schools, colleges, professional groups and BBB members. Information on WebTV as an option for obtaining access to the Internet will be included. Web TV information will include the names of BBB members to contact for donations of equipment and Internet service and information to help CIL staff assist consumers in evaluating whether Web TV is the best option for the individual. (ii) The extent to which the proposed demonstration activities include the use of proper methodological tools and theoretically sound procedures to determine the effectiveness of the strategy or approach (2 points). Case Study Methods to be Employed The review and analysis of existing computer recycling and Internet connectivity programs will employ accepted case study methods. These methods have been amply described by Yin (1989) and others and rely on a combination of quantitative and qualitative techniques for data collection. Furthermore, because of the need for examination of historical as well as current data, case studies require access to multiple sources of evidence. Yin (1989) cites six sources of evidence that must be examined in conducting a proper case study: documentation, archival records, interviews, direct observations, participant-observation, and physical artifacts. In addition to providing clear directives on proper use of the case study approach, Yin (1989) provides very clear directions concerning primary analytic techniques that can be used in examining data collected in this manner. Such techniques include pattern matching, explanation building, and time series analysis. Attention will be given to proper analyses of data collected in this investigation. Identification of CILs and Non-Profits to Participate Using case study design, at least two centers for independent living and one other non-profit organization with successful computer recycling and Internet connectivity programs will be studied. Centers will be selected after considering the length of operation of the program, the size of the program, location of the center (rural/urban, high technology workforce/low technology workforce, etc.) and the center's willingness to participate in the project and share their policies and procedures. In the first year, project directors at the CILs involved in the case studies will be paid as consultants for their time, expertise and materials they contribute to the project. Once the case studies have been analyzed and the prototype kit has been assembled, the kit and its related method will be tested by establishing a computer recycling and Internet connectivity program at a chosen CIL without such a program. The prototype kit will be refined using the evaluation of the test, feedback from participants, and input from consultants (persons directing successful programs). The site for the test will be a CIL that has volunteered to participate in the project and has demonstrated the commitment and resources to continue the program after the test is completed. (iii) The extent to which the proposed demonstration activities include innovative and effective strategies or approaches (4 points). Consumer involvement will be sought at all stages of development of the technical assistance program. Consumers will be asked to provide input on the design of the program, their training needs, etc. They will also be asked whether they prefer to use surveys, telephone interviews, or focus groups to communicate with program developers. A user group will be established for consumers who receive equipment and Internet connectivity through the project. The user group will provide a forum for consumer input as well as an opportunity to gain peer support and technical assistance. The user group may meet in a physical location, such as the CIL, or may meet in a virtual chat room. Input from the user group will be used to refine the program and improve the quality of the training, the assessment process, and all other aspects of the program. Using the refined kit, demonstration projects will be conducted in two to three CILs. As part of the demonstration projects, all people with disabilities who receive computers will be connected to the Internet. Participants who cannot afford to pay for Internet service will be provided with discounted or free Internet access. In addition to using their own resources, the centers will have access to members of the BBB who will assist in solving the problem of obtaining Internet access. The Better Business Bureau Consumer Education Foundation has agreed to work with the project to solicit connectivity for people with disabilities from their membership organizations which are Internet service providers. Companies contributing to the project may receive acknowledgment on the Disability Research Information Web site (DRIWS). The involvement of the Better Business Bureau Consumer Education Foundation is one of the most innovative aspects of this project. In the results our case studies, we expect to find that the success of computer recycling and Internet connectivity programs depends largely on the resources available in the local community--businesses that are upgrading their systems and have hardware to donate, individuals with the technical knowledge to assist in refurbishing donated hardware, and local Internet service providers (ISP) willing to donate services. The involvement of the BBB at the national level means that support for computer recycling and Internet connectivity programs will not be limited by the availability of local resources, but will instead, be capable of gaining and using support from the involvement of large national corporations, even though the company's headquarters, offices or plants may be located in distant regions of the country. The Better Business Bureau Consumer Education Foundation will be a national partner in this project. Their many contributions to the project include disseminating information about the computer recycling and Internet connectivity program to all BBB members, soliciting their involvement in the project, and connecting individual BBB members with the nearest CIL or other non-profit organization which has, or is starting, a program. The BBB Consumer Education Foundation will stress that all BBB members are partners in this project. The BBB Consumer Education Foundation has offered to approach national member organizations of the BBB, such as IBM, Apple, Compaq and Hewlitt-Packard and encourage them to donate new computers to the project on an ongoing basis. The involvement of corporations such as these could mean that participants with disabilities would have access to state-of-the-art equipment rather than the "better-than-nothing," slower, refurbished machines. National corporation members of the BBB who are Internet service providers (i.e., Sprint, AOL, MCI, AT&T) will be asked to provide discounts or contribute free Internet connection time to persons with disabilities participating in the project who cannot afford Internet service at the commercial rate. In exchange for assisting with the project, contributors will be acknowledged on the Disability Research Information Website. The BBB Consumer Education Foundation will also approach members that manufacture and distribute Web TV equipment and companies that provide WebTV Internet service to encourage them to participate in the project by donating equipment and Internet connectivity. In addition, the BBB Consumer Education Foundation will help members to think creatively about additional ways of supporting the project. Members will be asked to volunteer their time to help refurbish computers, train new users or help assess consumer requests for equipment. Moving companies, delivery services and taxi companies might be asked to provide free delivery of donated equipment to the CIL and to the recipients' homes. Storage companies might provide free storage for donated equipment. PLAN OF EVALUATION: For the purposes of this project, a successful computer recycling and Internet connectivity program will be defined by the following criteria:
After one year, the demonstration projects will be evaluated in regard to the above criteria. Project staff will gather data on the schedule of donations and consumer requests, the amount of time that elapses between the time a consumer requests connectivity and the time the consumer is connected, the number of consumers who receive a connection, and costs to the center. Program effectiveness will be measured by obtaining feedback on the timeliness of response, the quality of the training, and whether the equipment meets the predetermined needs. Data will be obtained from consumers through Likert scale surveys, telephone interviews and focus groups. Feedback obtained through the evaluation process will be used to improve the quality of the program. The goal of the project is to provide consumers with Internet access at the same time they are provided with a computer. Allowing for possible delays in obtaining an Internet account, we expect participants to be connected to the Internet within one month of receiving their computers. Project staff will contact participants by telephone one month after they report that they are connected. Consumers will be asked how often they use the Internet, what they use the Internet to do (entertainment, communication, financial management, etc.), how they go about locating the information they need, etc. Project staff will alert the CILs if consumers are having difficulty using the equipment, connecting to the Internet, or accessing information so that additional training can be provided. Four months later project staff will contact the same consumers again to determine if their use of the Internet to obtain information has increased and whether it is affecting more areas of their lives. Consumer feedback will be the primary measure of whether and how access to computers and information on the Internet has affected their quality of life. In this evaluation, project staff will not be concerned about whether consumers are accessing research information per se. The evaluation will focus on (1) whether consumers use the Internet to find information which they previously could only access through slower and less accessible means or which they could not find at all; (2) whether consumers believe that the information they are able to access has an effect their ability to live independently; (3) the project's effectiveness in increasing consumers' use of information technology. Data on types of information sought, sites visited, barriers encountered, etc. will be analyzed to provide feedback to researchers, policy makers, and other interested parties. (iv) The extent to which the proposed demonstration activities are likely to contribute to current knowledge and practice and be a substantial addition to the state-of-the-art (2 points). PRODUCTS, OUTCOMES AND IMPACTS: This project will extend the current understanding of barriers to effective access to information by people who depend on up-to-date and accurate information in order to maintain an acceptable quality of life. Specifically, the project will contribute to knowledge about:
The need to promote optimal access to national and international information infrastructures is critically important if the progress toward independence made by people with disabilities over the last half century is to be sustained into the 21st century. This project will provide much needed data on the role that consumer-controlled consumer-based agencies, working in collaboration with public- and private-sector partners, can play in expanding options for dissemination and access of information. (v) The extent to which the proposed demonstration activities can be applied and replicated in other settings (2 points). This project is designed to create the resources required to foster effective replication of successful information access strategies in other settings around the country. By design, there are a limited number of sites in which the project will be employed. This will allow for an in-depth assessment of strategies that work and an opportunity to identify problems that are likely to be encountered in future attempts to replicate similar efforts in other settings. The materials that will be developed through the project will focus on "how to" techniques that people can use in replicating similar efforts in other settings. Just as importantly, the project will develop resources regarding philosophical issues related to consumer control and maintenance of dignity among people who may be the beneficiaries of products and services that are provided in different sites. Specific products that will be generated through the project to promote replication include:
The focus of this project is on developing the capacity of local resources to gain and promote access to information. In this regard, primary emphasis of the project will be to develop resource materials which will lead to replication of successful strategies. D-3 Timeline HERE (g) Design of technical assistance activities (8 points total). In a research project, such as the currently proposed study, in which the overall goal is to "improve research information dissemination and utilization to promote independent living", it is essential that technical assistance be included in the design. Both ILRU and Kansas RTC/IL have substantial experience in developing and implementing effective and user-friendly technical assistance. Over a three-decade period, the collaborating organizations have developed and delivered technical assistance on a variety of subjects, including independent living center operations, the Americans with Disabilities Act, Section 504, personal assistance services, and managed care for people with disabilities. It is through this knowledge, experience, and collaboration, that two technical assistance projects have been designed specifically for use with the three target populations. T-1 is designed to serve consumers, family members, CILs, SILCs, ILPs, and consumer organizations who wish to access and discuss disability research information. This project will also serve to assist organizations that choose to act as information brokers or provide technical assistance to use the D-1 database, dissemination options, or recycled computer equipment. Technical assistance will be provided, in part, through use of the research primer to promote understanding of how research can be used to promote independent living. Policy makers will be provided with technical assistance to use needs and barrier information and dissemination and utilization evaluation findings. T-2 is designed to enable researchers to use strategies and methods developed in D-1 to abstract disability information in an understandable format and language and also to use dissemination and utilization options from D-2 to exchange research information and need for new disability research. (i) The extent to which the methods for providing technical assistance are of sufficient quality, intensity and duration (2 points). Technical assistance is provided throughout the duration of the project, but there is a significant increase in funding and activity during the mid and final years. Research is conducted in initial years to develop information and knowledge demonstration, dissemination, and utilization projects options. User manuals from the projects are used for technical assistance. Project staff who developed databases, system options, and user manuals will be available by telephone, e-mail, and newsgroups to provide support, as well as at conferences and training sessions. (ii) The extent to which the information to be provided through technical assistance covers all of the relevant aspects of the subject matter (2 points). As previously discussed, products are developed to include relevant information as described in detail in R-1 and through the National Advisory Committee and consumer feedback. Technical assistance will be provided by using DRIC products to increase the probability that technical assistance covers all relevant aspects of the subject matter. (iii) The extent to which the technical assistance is appropriate to the target population, including consideration of the knowledge level of the target population, needs of the target population, and format for providing information. The same strategies and methods to produce products and reduce barriers (needed information, understandable language and formats, alternate formats) will also be used to provide technical assistance to the target population groups. Contents, formats and language will be adjusted for each of the three target population groups. For example, content that is understandable for consumers, might not be that most accepted by policy makers or researchers. For those two groups, the strategy would be to use policy maker or researcher terminology and styles. Staff who have a background in policy and research would be used to provide technical assistance to these target population groups. Conversely, staff who have worked with consumers and practitioners will provide technical assistance to consumers while using terminology and styles that clearly communicate with these populations. (iv) The extent to which the technical assistance is accessible to individuals with disabilities (2 points). Information disseminated by the DRIC will be provided in alternate formats to individuals with disabilities. Alternate formats include large print, Braille, ASCII text computer disks, videotapes which are available in closed captioning. Interpreters and other personal assistance services will be made available at conferences. The DRIC's web site and database (D-1) will be accessible to individuals with sensory and physical disabilities according to official Web Accessible Initiative guidelines. Project T-1: Making Disability Research Information Accessible to Consumers, Family Members, IL Providers, and Advocates PROJECT ABSTRACT Through this project, technical assistance activities will be conducted using an array of dissemination, utilization, and technical assistance strategies that are designed to increase effective use of disability research in the lives of people with disabilities and the organizations that serve them. PERSONNEL: Name and Degree Position % time Laurel Richards, B.A. Training Director/P.I. 5% PROPOSED TIME FRAME: 5 Years The Secretary's Requirements: This project is designed to address the Secretary's requirement 5(4) "Develop and implement strategies to disseminate research information to promote independent living, using a variety of innovative methods, and media" and 5(5) "Develop and disseminate strategies that other information providers, such as CILS, NI on Disability-funded grantees, and consumer publications, can use to increase the utilization of research to promote independent living, and provide technical assistance to those entities to increase the dissemination and utilization of this information." TARGET POPULATION This project is directed toward consumers, family members, staff of centers for independent living (CILs) and Statewide Independent Living Councils (SILCs), consumer advocates, other service providers, and the general public. PROJECT OBJECTIVES: 1. Deliver technical assistance to consumers and other non-researchers on Center research, demonstration, dissemination, and utilization projects using the Internet and traditional technical assistance strategies. Deliver technical assistance on Center outcomes using a variety of strategies--including approaches available through the Internet, printed media, and presentationswhich provide consumers and other non-researcher stakeholders with research information in which they have expressed interest. 2. Deliver technical assistance on Center products and materials using research utilization strategies that provide non-researchers with tools for better understanding and using research information. 3. Evaluate technical assistance activities and make changes to methods of delivery, as indicated. PROJECT APPROACH AND METHOD: In formulating the methods by which to provide technical assistance to consumers and other non-researchers, consideration was given to the four following issues, raised by the Secretary in the RFP for this proposal. (i) The extent to which the methods for providing technical assistance are of sufficient quality, intensity, and duration (2 points). To address this issue, three approaches were designed to provide thoroughness in providing information on Center products and findings. These three approaches include: Technical assistance through the Internet and traditional TA strategies: The primary methods for providing technical assistance will be via, e-mail, chat room discussions, news groups postings, listservs, telephone, regular mail, and at the site of the individual requesting technical assistance. In addition, a national network of persons available to provide information on disability research will be developed, following the model established by ILRU (the Network of IL Technical Assistants. It is expected--at least during the last months of the 20th century--that the primary delivery method will be the telephone, and a significant amount of the budget's funds have been allocated for long distance charges. Technical assistance through dissemination activities: Technical assistance information will be communicated to consumers and other non-researchers using a variety of media, including publications of various styles, training presentations, and interactive media on the Internet. Technical assistance through research utilization activities: Technical assistance will be provided in conjunction with the Center's research utilization activities, the "how-to" materials designed for consumers and other non-researchers to use Center products and information more effectively. As will be seen, a separate project objective deals with evaluation of the technical assistance activities. Center staff's experience with operating and evaluating a technical assistance program on a nationwide scope for the independent living field will be drawn upon for both projects T-1 and T-2. User satisfaction with the delivery of technical assistance will be assessed, with requests for recommendations on how to further improve technical assistance to users. (ii) The extent to which information to be provided through technical assistance covers all of the relevant aspects of the subject matter (2 points). The goal of the technical assistance activities of the Center is to improve proper utilization of research information to promote independent living. Regarding relevancy of technical assistance activities: as with the Center's dissemination and utilization activities, selection of information to be addressed through technical assistance will be guided by findings from project R-1, consumer-identified research needs and barriers to effective information dissemination. Additionally, the DRIC National Advisory Committee will also help ensure that technical assistance covers all relevant aspects of the subject matter. (iii) The extent to which technical assistance is appropriate to the target population, including consideration of their knowledge level and needs and format for providing information (2 points). As will be seen in the following description of technical assistance activities to be provided by the Center, activities will be designed specifically to address findings from R-1, consumer identified research information needs. To assure that technical assistance activities are appropriate to target population's knowledge level, Center staff will again refer to the other aspect of R-1, consumer-identified barriers to effective communication of research information to non-researchers. In addition, the variety of technical assistance delivery approaches which the Center will employ provides additional assurance that needs of the target audience are met in formats and media most useful an accessible to them. (iv) The extent to which technical assistance is accessible to individuals with disabilities (2 points). The Center partners' many years of providing technical assistance to the independent living field includes extensive experience in working closely with people with disabilities, not only as members of their target audience but also as staff members. This includes people with mobility impairment, visual impairment, head injury, severe hearing loss, and mental illness, among others. Center staff have developed considerable expertise in providing information in alternate formats (e.g. large print, Braille, audio tapes, Ascii text disks, and Spanish translations) and in making accommodations for accessibility. This expertise with access issues in the area of technical assistance provision will be carried into the proposed project. DESCRIPTION OF TECHNICAL ASSISTANCE ACTIVITIES: Technical Assistance through Traditional TA Strategies Objective 1: Deliver technical assistance to consumers and other non-researchers on Center research, demonstration, dissemination, and utilization projects using traditional technical assistance strategies. TA activities in this objective will include: How to use the Center's research database, website, chat rooms, newsgroups, listservs; How to use the Center's guidelines for serving as a disability research information broker; How to use the Center's model for a computer equipment recycling and connectivity program; How to interpret and use findings from the Center's research projects; How to use the Center's network of research information sources to obtain contact information on researchers who can respond to questions regarding various research projects, modeled after the ILRU on-line, searchable database of individuals available to provide technical assistance on disability-related issues (see www.DIMENET.com/ilrulib/ilruta). Technical Assistance through Dissemination Activities Objective 2: Deliver technical assistance on Center outcomes using a variety of disseminate strategies--including approaches available through printed media, presentations, and the Internet--which provide consumers and other non-researcher stakeholders with research information in which they have expressed interest. These activities will include: Articles which will be prepared and published in both RTC/IL and ILRU newsletters on findings from the consumer-identified research subjects study and research barriers study (R-1), and from the research information acquisition and utilization trends study (R-3), from disability-related research abstracts and useful research-related Web sites (D-1, D-2), and from findings concerning computer equipment recycling and connectivity programs (D-3). Production and distribution of bi-monthly FAQS ("frequently-asked-questions" fact sheets) posted on DRIC's homepage on research subjects identified in R-1 as having high interest to consumers. FAQS will cover essential information about the research, including purpose, methods, intended beneficiaries, duration, dissemination activities, etc. Presentations on findings from Center research projects at annual conferences that draw consumers and other non-researcher stakeholders, e.g., NCIL, APRIL, SILC Congress, and specific disability organizations. Presentation of two national teleconferences annually on research subjects that received a high ranking with consumers as identified through R-1. Each teleconference will be presented twice, for a total of four teleconferences. Development and implementation of a self-administered on-line course on understanding the fundamentals of research, using R-2's research primer as the basis on which the curriculum will be developed. Production of two videotape programs annually which feature Center Co-director Lex Frieden conducting interviews with key researchers about their projects and with representatives of research funding agencies on research agenda setting practices, using findings from R-1 as guide in priority setting. Preparation and distribution via listservs, newsgroups, postings in DRIC's virtual library, and regular mail of fact sheets and other news release-type information featuring two-to-three-page summaries of findings and updates from Center projects. Technical Assistance through Research Utilization Activities Objective 3: Deliver technical assistance on Center products and materials using research utilization stra |
