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 strategies which provide non-researchers with tools for better understanding and using research information. Activities will include: Development of a how-to guide on serving as an information broker for consumers who wish to acquire disability-related research information using Internet technologies, including websites, chat rooms, newsgroups, listservs (D-2). These guides will be designed for information-and-referral specialists at independent living centers, public and university-based librarians, and other organizations serving people with disabilities; Preparation of abstracts written for non-researchers on disability-related research projects, using findings from project R-1 (identification of research subjects ranking highest in consumer interest) to set priorities for selecting subjects to abstract (D-1); Compilation of a research primer written for lay persons to explain the fundamentals of research terminology, methodology, results, etc., which can be used to upgrade one's skills as a member of a research peer review panel or research advisory committee as well as to better understand research projects undertaken in the disability and related fields (R-2). Evaluation of Technical Assistance Strategies Objective 4: Evaluation of technical assistance activities and make changes to methods of delivery, as indicated. The quality of the dissemination, utilization, and technical assistance activities of the Center will be evaluated with respect to how well they are meeting the needs of the target audience. Technical assistance provision will be evaluated with regard to timeliness, clarity, and quality of information. This evaluation will be conducted with a randomly selected sample of individuals who have requested technical assistance. Evaluation efforts related to technical assistance via dissemination and utilization activities will include enclosing a user satisfaction questionnaire in materials distributed by mail and listservs and posting it on the Website, chat rooms, and newsgroups; and requesting that respondents assess the quality of the materials disseminated with regard to utility, clarity, method of delivery, ease of use, and accessibility. In addition, persons participating in training activities--presentations, teleconferences, forums--will be requested to complete an evaluation assessing the training activities with respect to appropriateness of content and quality of both the presentation and any resource materials provided. These evaluation methods are all approaches that have been used regularly by Center staff over the years and have been found to be effective in determining the extent to which efforts are meeting real needs of the target audience. T-1 Timeline HERE T-2: Increasing Effective Dissemination of Research Information to Researchers and Policy Makers PROJECT ABSTRACT: Through this project, an array of dissemination, utilization, and technical assistance activities will be conducted which are designed to provide practical and structured approaches which will assist them in their efforts to disseminate findings to researcher and policy maker stakeholders. PERSONNEL Name and Degree Position % Time Laurel Richards Training Director/P.I. 5% PROJECT TIME FRAME: 5 years The Secretary's Requirements This project is designed to address the Secretary's requirements 4, "Develop and implement strategies to disseminate research information to promote independent living, using a variety of innovative methods, and media," and 5, "Develop and disseminate strategies that other information providers, such as CILs, NIDRR-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." following requirements established by the Secretary for this request for proposals: TARGET POPULATION: This project will be directed toward researchers, research funding agency staff, and policy makers. PROJECT OBJECTIVES: 1. Deliver technical assistance to researchers, research funding agency staff, and policy makers on Center research, demonstration, dissemination, and utilization projects using the Internet and traditional technical assistance strategies. 2. Deliver technical assistance on Center outcomes to researchers, research funding agency staff, and policy makers using a variety of strategies--including approaches available through printed media, presentations, and the Internet. 3. Deliver technical assistance on Center products and materials using research utilization strategies which provide researchers with tools for increasing the use of research information by non-researchers. 4. Evaluate technical assistance activities and make changes to methods of delivery, as indicated. PROJECT APPROACH AND METHOD: In formulating the methods for providing technical assistance to researchers, research funding agency staff, and policy makers, 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 ensure 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, newsgroups postings, telephone, regular mail, and in person. In addition, a national network of persons available to provide information on disability research will be developed based upon 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 to long distance charges. Technical assistance through dissemination activities: Technical assistance information will be communicated to researchers, research funding agency staff, and policy makers, using a variety of media, including publications of various styles, training presentations, and Internet activities. 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 researchers to use Center products and information more effectively. As will be seen, a separate project objective deals with evaluating the technical assistance activities. The experience of Center staff in operating and evaluating technical assistance programs on a nationwide scope for the independent living field will be drawn upon for both projects, T-1 and T-2. An assessment procedure will be employed by which user satisfaction with provision of technical assistance, both by Center staff and by those to whom users are referred outside the Center. Through this procedure, not only is user satisfaction with delivery of technical assistance assessed, but recommendations for improving the technical assistance program are obtained. By this method, the technical assistance activities are continually examined for ways to deliver assistance more effectively. (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 use of research information, and 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, information will be sought from nationally recognized disability researchers who are on the proposed DRIC National Advisory Committee. (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 are designed specifically to address the needs of researchers, research funding agency staff, and policymakers. (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 much experience with 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, or mental illness, among others. Center staff has developed considerable expertise in providing information in alternate formats (e.g. large print, Braille, audiotape, ASCII text disks, and Spanish translation), 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 researchers, research funding agency staff, and policy makers on Center research, demonstration, dissemination, and utilization projects using traditional technical assistance strategies. Activities will include: Using of the Center's research information database, website, listservs, newsgroups, and chat rooms to increase effectiveness in dissemination of research information to researchers; Communicating the Center's findings from R-1, consumer-identified research interests and barriers to effective use of research information by consumers to-researchers, research funding agency staff, and policy makers. Making the Center's research primer (R-2) available to researchers who could share it with consumers who are working with them in the Participatory Action Research (PAR) process. Technical Assistance through Dissemination Activities Objective 2: Deliver technical assistance on Center outcomes to researchers, research funding agency staff, and policy makers using an array of dissemination approaches, including printed media, presentations, and the Internet. Activities include: Submission of articles containing research findings regarding consumer-identified research needs and barriers to effective dissemination of research to journals designed for researchers (R-1), and submitting articles regarding trends in research information acquisition and utilization by consumers with disabilities (R-3). Presentations at conferences designed for researchers, including ACRM, NARRTC, Society for Disabilities Studies, etc., on findings from Center research projects and recommendations regarding effective dissemination/utilization strategies of research findings to consumer audiences. Distribution of informational updates on R-1 and R-3 using listservs and news groups. Development of virtual library containing user manuals. Technical Assistance through Research Utilization Activities Objective 3: Deliver technical assistance on Center products and materials using research utilization strategies which provide researchers with tools for increasing use of research information by non-researchers. Activities include:
Evaluation of Technical Assistance Strategies Objective 4: Evaluation of technical assistance activities and make changes to networks of delivery, as indicated. The quality of the dissemination, utilization, and technical assistance activities of the Center will be evaluated with respect to how well they are meeting the needs of the target audience. Efforts related to dissemination and utilization activities will include enclosing a user satisfaction questionnaire in materials distributed by mail, and by listservs, and posting it on the Web site, chat rooms, and news groups; and requesting that respondents assess the quality of the materials disseminated with regard to utility, clarity, method of delivery, ease of use, and accessibility. In addition, persons participating in training activities--presentations, teleconferences, forums--will be requested to complete an evaluation, assessing the training activities with respect to appropriateness of content and quality of both the presentation and any resource materials provided. Technical assistance provision will be evaluated with regard to timeliness, clarity, and quality of information. This evaluation will be conducted with a randomly selected sample of individuals who have requested technical assistance. These evaluation methods are all approaches that have been used regularly by Center staff over the years and that have been found to be effective in determining extent to which efforts are meeting real needs of the target audience. T-2 Timeline HERE h) Plan of Operation (6 points total). The plan of operation involves four key components. These components include Total Quality Management (TQM), the DRIC operational model, a modified form of management by objectives that is compatible with TQM, and project budgeting. Senior Management Teams Each project's staff represents a project team, with both the senior management and the advisory team represented. The Senior Management Team members staffing the projects will use TQM strategies such as continuous assessment and quality improvement based on consumer need, open communication, innovative ideas, and effective procedures. Senior staff are well versed in these strategies and will ensure their use throughout each of the projects. All teams are designed to be complementary and interactive. This is accomplished in part through the operational model design to promote interdependence among projects. First, projects are implemented in a sequence in which initial projects provide information and products for subsequent projects. (See Figure 2, Plan of Operation: Projects and Project Sequence). This plan of operation will be discussed in detail later in this section. Second, staff from both the RTC/IL and ILRU serve on the project teams. An individual's inclusion on a team is based on one's background and knowledge that can contribute to the success of a particular project. Team communication is a key feature. During the development of this proposal the staffs of the RTC/IL and ILRU have found that a multitude of communication vehicles can be effectively used to facilitate management and project development across both centers. Communication vehicles used include the Internet, e-mail, telephone conferencing, surface mail, and facsimile. These vehicles enhance the strong relationships that have developed between the two centers over time. These centers have established working relationships, and linkages with the IL field. These factors diminish barriers created by physical distance between the centers. While some face-to-face interactions will occur as the result of National Advisory Committee meetings and project operations, the project staff is committed to effectively using the same technology that is being developed to assist the target population in accessing disability information to facilitate their own communication. Project accountability is a key feature of the plan of operation. Team leaders are not elected by the research team as would be the case in TQM. The principal investigators or project directors have assumed leadership on the basis of their backgrounds, interests, and commitment. Project teams work to complete specified activities to fulfill the Secretary's priority and the requirements relevant to their particular DRIC project. The Senior Management Team provides financial, program, technical, and other support to each project team to increase efficiency and maximize outcomes and impacts. Figure 2 HERE The Senior Management Team will be composed of individuals who have made significant contributions to the IL field over the years. Each brings unique talents, skills, and backgrounds that blend into a cohesive working team. Senior Management Team members will also be responsible for particular projects. Both project teams and Senior Management Teams will meet weekly as the Center develops and then monthly once operations are well-established. Senior Management Team members include Lex Frieden, Glen White, Laurel Richards, Ken Golden and Jim Budde (see Key Personnel Section, Page ____). Operational Model The operational model, illustrated in Figure 3, Plan of Operation: Projects and Project Sequence, is based on the Secretary's Priority 5 requirements and additional needs in the field. The model has three main categories of activity: Inputs; Center Processes and Projects; and Impacts. Inputs, in the form of disability research information and knowledge and from each of the three consumer target populations, provide prerequisite information needed to develop and test interventions and products in the Center Processes and Projects category. The information from these sources is crucial in ensuring that all project activities are relevant and potentially beneficial for designated intended end-users. The second category, Center Processes and Projects, contain the majority of projects for this proposed DRRP (7 of 8 or 88%). As the individual cells within this category suggest, the proposed projects have an interactive and iterative design. The text in the cells describe the various research, demonstration, dissemination and utilization, and technical assistance projects. The identifying project numbers are below the text and below the designated project numbers are the Proposed Priority 5 requirements that the projects are addressing. The arrows illustrate both the flow of information from cell to cell and the interrelationship between activities. Whenever possible, the projects are sequenced to provide maximized information and experience gained from previous projects. The notion is to pass on a systematic program of research, dissemination and utilization, and technical assistance. Finally, the Impacts category contains a longitudinal research project (R-3) which will help identify trends and effects of the research, dissemination and utilization, and technical assistance for each of the three identified populations this Center is proposing to serve. Each of these projects will be described in much greater detail, later in this narrative. This operational model serves to provide the "big picture" view of the DRIC projects, and a master blue print for the DRIC. Management by Objectives The task and timelines, and the project objectives for this Center were developed from management by objectives technology. We have adapted this technology to include flexibility in modifying objectives, and improving performance and products through TQM. In other words, management by objectives provides an overall structure for performance, but TQM provides the techniques and methods to effectively and economically meet or shape the objectives. The TQM process is used to produce what is required to meet the goals of the project, the goals of the center, the needs of the target population, and the Secretary's priority 5 and related requirements. Figure 3 HERE Individual project budgets have been developed to meet project objectives and to serve as criteria in the center's financial management by objectives approach. Spending will be monitored to ensure adherence to project budgets. In addition to monthly expenditure reports, project projections will be made each quarter to assist project directors in forecasting and managing their financial resources. Project information will be combined so that the Senior Management Team can manage the financial resources of the entire center. In addition to the above report, the grants management department of the RTC/IL will also make current budget information available on request and report any oversights related to spending. The Senior Management Team will ensure that activities are conducted on time, within budget, and according to federal and state guidelines. NOTE that the evaluation section on page___ provides a clear description of exactly how tasks, timelines and responsibility are used to achieve objectives. (i) Plan of Operation to Achieve Project Objectives On Time and Within Budget: Defined Responsibilities, and Task Timelines (3 points). The plan of operation has been discussed in the narrative above this section. It describes how each project has specific products, tasks, timelines, responsibilities, and budgets. The projects are sequenced so that results of initial projects are used in shaping subsequent projects. All project tasks and timelines are sequenced to produce a flow of activities that can be managed to achieve objectives on time and within budget, and project directors and teams are assigned responsibility to ensure that this happens. The grants management section of the RTC/IL will produce monthly reports and quarterly projections for each of the eight DRIC projects. (ii) Plan of Operation For Using Resources, Equipment, and Personnel to Achieve Each Objective (3 points). Perhaps the greatest resource used will be consumers, family members, practitioners, and advocates from the IL field. They will serve as integral members of project teams and provide practical guidance. Another resource includes the systems that have been developed by the RTC/IL and ILRU over the years. These resources include a broad range of dissemination systems. Both centers produce their own newsletters that will be used to disseminate research and Center product information. Both centers also have websites that will be used to disseminate research and product information, and to describe the projects of the DRIC. Both centers have a number of intervention products for consumers, family members, CILs, SILCs and disability service providers. ILRU maintains a current list of CILs, SILCs, and disability service providers, and in addition the RTC/IL has an extensive mailing list of consumers, policy makers and federal administrators. Both centers have built numerous relationships over the years with consumers, family members practitioners, policy makers, advocates, federal and state administrators, and researchers. It should be noted that most of the physical resources for this project (including equipment) are provided by the RTC/IL and ILRU. Salaries and other funds contained in the budget justification will be used in projects to meet project objectives. Specifically, funds will be used for communication, personal assistants, support personnel, consultants, travel, and coordinating project activities. A full description of facilities, equipment, and other resource can be found in the resources section on page___. The allocation of personnel resources is determined by the percentage of time that individuals will work on each project. These allocations were projected to ensure that the objectives of each project would be met. Personnel percentages of time allocations can be found in Figure 4, (Year One: RTC/IL and ILRU combined Effort Chart by Projects). The total of FTEs for each project are totaled at the bottom. The composite budget for all personnel and resources can be found in Figure 4, Year One: RTC/IL and ILRU combined Budget by Projects, page ___. This budget provides the precise amounts of funds for each line in each project budget, the totals for each project, and the composite budget for year one. All line item funds are based on project activities and the intensity of project activities in year one. It is important to note that the allocation of staff time and resources to a project depends upon its sequence during the life of this 5-year Center. Thus research projects have heavier staff time allocations in the early years, while the technical assistance projects have heavier staff allocations in the latter years. Estimates are based on over 20 years of experience in operating similar projects. (i) Collaboration (3 points total) (1) Quality of collaboration. (i) Effective Collaboration With Agencies, Organizations or Institutions for Achieving the Project Activities (1 point). (ii) Organization or Institution's Commitment to Collaborate (1 point). (iii) Collaborators have the capacity to carry out collaborative activities (1 point). One of the underlying strengths of the proposed Center is the interest in and commitment to the principle of collaboration. Of course, the success of the entire Center operation will be built upon and depend upon the collaboration between the principle organizations and their respective staffs at the University of Kansas and The Institute for Rehabilitation and Research Independent Living Research Utilization program. Collaboration between the RTC/IL and ILRU presents a unique opportunity to combine the knowledge, programs, personnel, and information systems of both centers into one disability research information center. Collaboration between these two centers can be found in the various projects where individuals from both centers are involved jointly in projects. The role of staff from both centers within projects has evolved so that each individual's strengths and background compliment those of the other. Collaboration within and across projects through complimentary staff assignments facilitates interdependence that is required to effectively operate a complex program involving two centers. Figure 4 HERE In addition to collaboration between Kansas and Houston, broad collaboration with individuals, agencies, organizations, and institutions is a key strategy that is used through the design of the Center. Collaborative activities have been proposed with: individual consumers, family members, and IL advocates; IL organizations including NCIL, APRIL, and DIMENET; research organizations including NARRTC, and the Society for Disability Studies; information repository and utilization programs including NARIC and NCDDR; and with other types of organizations including Rehabilitation International, and the Better Business Bureau Consumer Education Foundation. Discussions have been held with principal members of all of the organizations listed here (and others noted elsewhere in the proposal narrative), and without qualification, verbal and written support for the proposed collaborative activities has been offered (see letters of support in Appendix D). In order to ensure that collaborators are up to date and well informed about Center activities, and to insure that Center staff are completely informed about developments that might affect the Center, representatives of collaborating organizations have been recruited to serve on the Center's National Advisory Committee. The Center staff will be guided and bolstered by this select team of outstanding leaders from the fields of independent living, rehabilitation service delivery, knowledge transfer and utilization, and rehabilitation research. Together, the team will function as the Center's National Advisory Committee. Individually, team members will serve as non-paid consultants and advisors to the separate projects, which collectively constitute the center. In addition to their unique personal characteristics and attributes, and their personal experience and knowledge, each member of the advisory committee team brings with him or her the resources of their respective organizations. A table listing the National Advisory Committee members and noting their unique characteristics and constituency backgrounds can be found in Appendix D. In summary, the individuals who have committed themselves to supporting and contributing to the Center by serving as advisors and as liaison's with their own organizations and other constituencies represent a wide range of knowledge, interests and needs which are pertinent to the mission and work of the Center. A few examples of the importance of these advisors and their linkages to organizations in which they play leadership roles are in order. John Etchieson, Director of the Better Business Bureau Consumer Education Foundation, has already advised the Center about the practicality and means of soliciting computer hardware, both new and old, from members of Better Business Bureaus around the country. Etchieson has advised that some of the larger national members of the Better Business Bureaus which manufacture and sell computers, such as IBM, Compaq, and Dell, may be willing to contribute over stock and surplus new computers to the independent living center recycling projects described in dissemination and utilization project three above. Etchieson has also advised that certain national Internet service providers, such as MCI, Sprint, AOL, and AT&T, may be willing to work through the Better Business Bureaus to provide heavily discounted or even free Internet access to people with disabilities who are participating in the independent living center recycling projects in their communities. Finally, Etchieson believes that local businesses and companies who belong to Better Business Bureaus are likely to join the already identified national organizations in providing hardware as well as technical assistance to support the independent living center computer recycling projects in their communities. Obviously, these kinds of contributions will be vital to the success of the recycling demonstration, and John Etchieson has the capacity to back up his recommendations by securing the cooperation of Better Business Bureaus and their member organizations throughout the United States. Thomas Backer, President of the Human Interaction Research Institute, and Past President of the Society for Knowledge Utilization, has offered to link the Center with knowledge transfer and research utilization experts outside the area of disability and rehabilitation. These experts may be able to offer insights and advice about innovative methods for fostering research utilization which have not yet been applied in the fields of rehabilitation, independent living, or disability. Backer will also share his experience as co-principal investigator of one of the National Institute on Handicapped Research's (NI on Disability's predecessor organization) most successful knowledge transfer programs. Finally, Backer will contribute his own considerable expertise and that of his organization in the area of evaluation of research utilization activities. Again, Backer's experience and knowledge in a host of pertinent areas will be relied upon heavily as the Center staff and other collaborators engage in seeking innovative and effective means to ensure that research results and related information is available and usable by people with disabilities, their families and other supporters, and by independent living programs and other service providers. Paul Spooner offers a unique perspective, as Vice President of the National Council on Independent Living. In this capacity, he will serve as a sounding board and critic of Center activities at the highest level. Furthermore, he will insure that the Center's goals in relation to accessing independent living center personnel through NCIL's annual meeting and through other organizational mechanisms are successfully met. As director of a local independent living center, Spooner will help to ensure that the Center's implementation of particular projects will take into consideration practical issues related to the day-to-day management of independent living centers. He will make certain that the Center's plans are feasible. Spooner manages one of the four primary host sites for DIMENET, the national independent living computer network. His service as a member of the Center's National Advisory Committee will ensure that communication with consumers is effective and efficient. Tom Seekins is Director of the Research and Training Center on Rural Rehabilitation at the University of Montana. He served as President of the National Association of Rehabilitation Research and Training Center in 1997-1998, and he is currently President of the American Disability Prevention and Wellness Association. Most importantly, Seekins is a role model for other disability researchers because of his commitment to making information accessible to consumers. Seekins' involvement in this Center will focus on identifying opportunities and evaluating approaches that teach and encourage researchers to attend to the information needs of individuals with disabilities and the organizations which serve them. Seekins will also help the Center to make sure that the unique characteristics of people with disabilities living in rural areas are recognized and addressed. In addition to experts in the process of research utilization and knowledge transfer, advisors from businesses will also be sought to assist the Center in making important linkages commercial organizations in cities across the U.S. These business advisors will provide referrals to technicians with expertise in Internet technology and modern information processing and transfer methods. The Center's advisory team includes researchers who have a profound commitment of participatory action research and a sincere desire to see that the products of their work and that of their colleagues is useful to the people whom they consider to be the ultimate beneficiaries of their work. Biographical data of all the members of the Center's National Advisory Committee can be found in Appendix E. Additionally, each one of the Center's National Advisory Committee members has offered a letter of support for this proposal. Their letters include personal perspectives on the roles that they intend to play as Center advisors. In addition to the Center's advisors, a number of exceptionally well qualified experts in the fields of research and evaluation design and methodology, research utilization and dissemination, Internet access and utilization, and international rehabilitation research utilization and dissemination have agreed to join and collaborate with the Center as consultants. A list of these consultants noting their unique areas of expertise and other important information can be found in Appendix E. Just as the Center's advisory team enriches the overall approach outlined in this proposal, those individuals who are committed to serve as consultants to the Center bring a wealth of experience, knowledge, and expertise to this endeavor. They are all sincerely committed to the mission and goals of the proposed Center, and they have all expressed a desire to be partners in the Center's activities, as opposed to serving strictly as narrow subject area experts. As consultants to the Center, each of them will deliver specific products identified in the project descriptions above. However, beyond that, each of them has volunteered to serve along with members of the Center's National Advisory Committee to assist Center staff and other collaborators in the process of managing and implementing the overall Center program. Clearly, the Center will benefit in many respects by collaboration with individuals and organizations. A project of the sort described in this proposal could not be conducted effectively without collaboration. Collaboration serves as a mechanism for extending the work of Center staff, and, in this project, it serves as an invaluable mechanism for obtaining needed information. It will also help reduce costs and enable the proposed project to carry out a complete program of activities, the cost of which would most likely exceed the allocated budget without the kind of contributions collaborators and advisors provide. (j) Budget Adequacy And Reasonableness (4 points total) (i) The extent to which the costs are reasonable in relation to the proposed project activities (2 points). The budget for any single year does not exceed $399,999. Cost sharing will be in the amount of $460,000 or 23 percent of the total budget. Of the P.I.'s salary, $240,000 will be contributed to grant activities and management over the five years of the project. The University of Kansas will also provide $220,000 in unrecovered indirect cost that results from the difference in the 46 percent negotiated and the 25 percent rate granted by the University of Kansas. These commitments show a major dedication to independent living and the proposed center, DRIC. Note that no equipment is requested. Both the RTC/IL and ILRU will provide this resource. An overall budget for all projects in year one is included in Figure3, RTC/IL and ILRU Combined Budgets by Projects. This composite budget reflects initial project budgets that are based on project activities during year one. The composite also includes the DRIC budget total. Note that this composite does not precisely match the RTC/IL and ILRU budget sections, because 1) identified RTC/IL staff will work on projects whose P.I.s are at ILRU and identified ILRU staff will work on projects whose P.I.s are at the RTC/IL and 2) some resource costs in the RTC/IL budget are spread across all projects. The year one budget reflects higher costs in R-1, R-3 , D-1, D-2, and D-3, because these projects involve research, development, and testing in the first year that will lead to information, methods, technology, and products that will be used in later years in the TA projects. While the overall budget will not exceed $399,999 in subsequent years, project budgets will be refined each year in accordance with project activities. Budget estimates have been projected for five years to ensure that there are adequate funds for all proposed projects over the life of DRIC. Figure 4, Year One: RTC/IL and ILRU Combined Effort Chart by Projects illustrates the percentage of time spent by personnel across projects in year one. Note that Budde's percentage of time has been increased to reflect cost sharing. Budgets reflect over 20 years of combined budgeting and project management experience at the RTC/IL and ILRU. The percentage of time of both Lex Frieden and Glen White are greater than appear on the budget. The reason for this is their involvement in other dissemination and utilization projects and activities that will also be used for DRIC. Figure 3 HERE Figure 4 HERE (ii) The extent to which the budget for the project, including subcontracts, is adequately justified to support the project activities (2 points). A detailed and complete justification is provided in the budget section that precedes the project narrative. Justifications are provided for both the RTC/IL and ILRU subcontract. The justifications include how funds will be expended for consumer consultants and their personal assistants, travel, consultants and National Advisory Committee member expenses, communication, staff salaries and benefits, supplies, publications, NCIL training, photocopying, and other items required to operate the proposed DRIC. (k) Plan of Evaluation (7 points total) (i) The extent to which the plan of evaluation provides for periodic assessment of progress (2 points). The plan of evaluation for the DRIC will include both formative and summative methods. These methods will be used for specific purposes within projects, across projects, and for the Center as a whole. The next section contains an overview of components that are included in the plan of evaluation. Projects Evaluation and Enhancement. Formative methods will be used regularly to assess ongoing progress, improve products and information systems, and manage personnel and resources. Timelines (including tasks and individuals responsible for tasks for a five-year time period) are included in each research, demonstration, dissemination, and utilization, and technical assistance and training project. This information will be used systematically for formative evaluation and feedback. In other words, tasks and timelines will be compared to the projected completion date and expenditures will be compared to project budgets. Tasks, timelines and budgets will be refined in more detail pending successful Center funding. Analysis of project timelines will be used to determine if project activities are behind, on, or ahead of schedule. When projects are ahead of or on schedule, project staff will be acknowledged through positive feedback. When activities are behind schedule or budgets are overspent, discussions will be held to determine the reasons and possible solutions. If warranted, resources will be reallocated or advisement might be used to improve project management. Formative evaluation, use of assessment information, and feedback will be the primary tool used in, and across, all projects. Project directors will use their tasks, timelines, budgets, and product activities to do weekly assessments. Formative information will be combined at monthly intervals for strategic management of the DRIC. Center Evaluation and Strategic Management. A master project schedule will be developed that includes all projects on a master timeline spreadsheet. The spreadsheet will be used to compare project tasks and timelines to the current date. This method and master spreadsheet has been developed, refined, and used by the RTC/IL over the last 15 years. After each project director conducts project assessments, they will forward monthly reports on project tasks, timelines, budgets, and results, so that the information can be included in a composite monthly report. Dr. Budde, who is responsible for evaluation, will compile the results. The monthly Senior Management Team review will help ensure that the DRIC project activities are on schedule. Qualitative Formative Evaluation. The primary purpose of qualitative formative evaluation is to shape and produce high quality and effective project products. This also includes products that will be empirically tested such as the research primer (R-2). Qualitative evaluations will be made during product development to determine the utility, ease of understanding, and economy of each product. Consumers and other potential users of products will participate in the formative assessments, and they will be asked to provide feedback for improvements. Qualitative assessments will be conducted using four different approaches. 1. Inclusion of consumers and potential users as integral members of project teams in product development, testing, and dissemination. Consumers who have been identified as leaders through the R-1 consumer survey process, or who have previously worked with either the RTC/IL or ILRU, will be invited to serve on various project teams. 2. Onsite qualitative evaluations from those involved in pilot tests. These individuals are representative of those who will eventually use the products. 3. Review by National Advisory Committee of all projects at specified intervals. 4. Review by the Senior Management Team of all products and product revisions at specified intervals. Specified intervals will include: during product design, after the product is designed, and after refinement of the product (testing, revisions), and before dissemination. The final quality check and approval will be the responsibility of the Senior Management Team. While project progress is important, the quality of products will have a more significant effect on maximizing outcomes and impacts. In other words, the quality of products will play a key role in ease of dissemination and usefulness to the target population. Providing high quality and useful products is an overriding goal of the Senior Management Team. Summative Evaluation. Formative data will be combined for summative evaluations at the end of the five-year period. Outcome and impact data will be combined with the timelines for the summative evaluation. The primary purpose of this evaluation will be to determine the productivity, effectiveness, and impact on each of the three target population groups. The summative evaluation will especially focus on R-3, which is the longitudinal study of Disability research information dissemination and utilization. This research project is specifically designed to evaluate changes in disability information dissemination and utilization over time. Once valid variables are identified during year one, these key variables will be used to conduct surveys that can be used as part of annual evaluations and the composite five-year summative evaluation. While many changes might not be directly attributed to the DRIC, it will provide useful information to guide the Center and to compare the performance outcomes and impacts of the DRIC. Summative information will be forwarded to NI on Disability; other research agencies; CILs, ILCs, and ILPs; and interested parties and organizations, such as NCIL, APRIL, and NCD and consumers (including family members). Several versions of the report will be produced in formats and language that is practical for each target population group. Alternate formats in large print, Braille and ASCII files on disk will also be available. (A) Implementing the plan of operation (1 point). Key functions and the plan of operation have been described in the "Plan of Operation" section on page ____. In brief, the plan of operation is implemented through project teams that have been assigned the responsibility of overseeing projects. Responsibility includes both implementation and quality of project operations and products. Project teams must ensure that activities are on time and that the project stays within budget. Planned project task, timeline, and budget criteria serve as the milestones for plan implementation and project operation. All projects are designed to meet the Secretary's Priority 5 requirements and other identified needs in the field and also to operate in an organized sequence of research, development, demonstration, dissemination, utilization, and technical assistance (See Figure 3, Operational Model of Projects and Project Sequence, Page ___). Project timelines are developed so that projects are organized in a logical sequence where results of initial projects are used in subsequent projects. The Senior Management Team provides leadership, guidance, and oversight which involves monitoring and shaping all projects. Primary tools include formative and summative evaluations based on project performance, budget performance, product quality, outcomes, and impacts. (B) Achieving the project's intended outcomes and impacts (1 point). Intended project outcomes and impacts are the responsibility of project teams, which are held accountable by the Senior Management Team. Overall outcomes and impacts have also been identified for each target population group. See Figure 3, Operational Model of Projects and Project Sequence, Page ___. Evaluation and assessment information will be used to ensure DRIC outcomes are produced and that intended impact is achieved. (ii) The extent to which the plan of evaluation will be used to improve the performance of the projects through the feedback generated by its periodic assessments (1 point). The critical means for evaluating project performance through feedback and systematic assessment have been discussed in the two sections above, "Project Evaluation and Enhancement" and "Center Evaluation and Strategic Management." Formative assessment and feedback is used at all levels. Criteria for project performance are found in each project's tasks and timelines. To make assessments completed tasks are compared to timelines. Assessments are made weekly within each project by project directors and across all projects at monthly intervals by the Senior Management Team. The essential feedback qualities are immediacy and consistency. By conducting regular, frequent reviews of progress, adjustments are made on a timely basis, Center staff will minimize the required effort, time and resources. (iii) The extent to which the plan of evaluation provides for periodic assessment of the project's progress that is based on identified performance measures (4 total points). (A) Progress Clearly Related to Intended Project Outcomes and Expected Impacts on the Target Population (2 Points). Proposed products, outcomes, and impacts are included in the planning of each project. The specification of products, outcomes, and impacts serves as criteria for project evaluation. The combined project criteria serve as criteria for the Center. This criteria will be entered into a database at the RTC/IL and updated and reviewed by the Senior Management Team each month. Monthly evaluation data will be entered directly into the spreadsheet that has been designed and developed for the plan of evaluation and project management. Pertinent data at ILRU will be forwarded via e-mail attachments. Data will be available at any time for project staff to make assessments and to confirm or improve performance. Monthly performance reports produced from the data to reflect project performance as well as other project data will be combined to reflect total Center performance. The Senior Management Team will review the performance and make adjustments as necessary. This information will also be reviewed by the National Advisory Committee and forwarded to the NI on Disability project director. It should be noted that in addition to the Center's products, outcome, and impact evaluation system, R-3 is designed to evaluate dissemination and utilization of disability research information on a national level. This data will also be used in the overall evaluation and used by project teams and the Senior Management Team. Outcomes from the Center will be compared to national trends of dissemination and utilization over a four-year period. (B) Objectives: Appropriately Quantifiable or Qualitative (2 points). Four measures are used to assess quantity and quality. 1. Objectives for each project will describe inputs, processes, products, and outcomes. Products and outcomes will be quantified as part of the overall evaluation. 2. Products will also be evaluated for quality and relevance by consumers, National Advisory Committee members, Senior Management Team, and assessment and feedback from product users. 3. Tasks and timelines will provide detailed timeline criteria to be used for performance evaluation. 4. Criteria for methods of research and evaluation are established in the research field. These criteria will be used to maintain a specified level of rigor in each research project. (l) Project Staff (i) The extent to which the key personnel and other key staff have appropriate training and experience in disciplines required to conduct all proposed activities (2 points). Staff bring a wealth of education, training, and experience in disciplines that are required for this Center. The disciplines include psychology, communication, human development, political science, management, and independent living. While the IL field is not considered a discipline, concepts, philosophies, practices, and standards have been pioneered by the key personnel who would be integrally involved in the Center leadership. A total of 75 years of experience across all of the disciplines referenced above has been compiled by project staff. Brief resumes of key personnel can be found in this section and complete resumes can be found in Appendix E. These resumes include detailed information about degrees, training, and experience using disciplines in various positions, and the length of time in the positions. It should be noted that 80% of key personnel on the Senior Management Team have disabilities. Leaders also represent other underrepresented groups in independent living including women and aging persons. (ii) The extent to which the commitment of staff time is adequate to accomplish all the proposed activities for the project (2 points). Lex Frieden and Glen White will play key program and leadership roles in the center. Both will serve as principal leaders on the Senior Management Team. These leaders have distinguished themselves individually in the IL field and rehabilitation research. Together they will provide overall leadership for the Center's program. They will also serve as principle liaisons to the IL and rehabilitation research fields. Lex Frieden will serve as a leader on the Senior Management Team and as the Principal Investigator of project D-2, which is the central project for the development and implementation of innovative strategies, methods, and systems to diffuse Disability research information. He will provide direct liaison with such organizations as the National Better Business Bureau, NARIC, and the National Council on Independent Living. Mr. Frieden holds a full-time faculty appointment at Baylor College of Medicine, providing access to a wide range of research resources, including computer technology, library materials, and policy expertise. He is also Chairman of the Board of the AAPD (American Association of People with Disabilities). Dr. White will also serve as a leader on the Senior Management Team and as Research Director for the Center and as P.I. on two research projects (R-1 and R-2). He will provide direct liaison with the National Association of Rehabilitation Research and Training Centers (NARRTC), Association of Programs for Rural Independent Living, and the American Public Health Association's Disability Forum. Dr. White is an Associate Professor in the Department of Human Development at the University of Kansas. He is currently President of the National Association of Rehabilitation Research and Training Centers (NARRTC). The commitment of time of both Frieden and White are appropriate and commensurate with similar projects operated by both the RTC/IL and ILRU over the past 15 years. It should be noted that the percentage of time allocated to this Center is greater than stated in the budget and on projects. This is due to the fact that the individuals are involved with projects under other grants, and these projects will be combined with the projects designed for this Center. Laurel Richards and Ken Golden will play key roles in demonstration, dissemination, utilization, technical assistance and publication. Richards has a broad background in developing products and using communication systems that meet needs in the developing IL field. Products, technical assistance, and training include interventions for IL management, legislation, service, and advocacy. She has had experience using a wide range of dissemination methods that include "hands on training," newsletters, teleconferencing, and the Internet. Richards will serve on the Senior Management Team and also as the Training Coordinator. The proposed coordinator of training, Ms. Richards serves on the NCIL Rehab Act Committee, and the P.I. of D-3. In addition, she is a member of the NCIL board of directors. These relationships will assist the Center staff in keeping informed about developments in independent living policy and other issues which come into play in the development of disability-related policy and research. . Ken Golden brings a background in establishing, refining, updating, and evaluating databases and website design. Golden has experience in using computer languages Visual Basic, C++ and for web design, HTML 4.0. He also has experience in coordinating other activities of editors, graphic artists, and Spanish translators to develop the RTC/IL's products. One of Golden's recent accomplishments has been the refinement and dissemination of the "Guidelines for Reporting and Writing About People with Disabilities, 5th Edition" that serve as standards for terminology in the disability field. The RTC/IL "Guidelines" were adopted by the Associated Press Stylebook, Journal of the Association for People With Severe Handicaps, Rehabilitation Counseling Bulletin, Association of Retarded Citizens, National Organization on Disability, American Association for the Advancement of Science, and President's Committee on Employment of People With Disabilities. The "Guidelines" have provided a common reference for thousands of reporters who previously had no guidelines for disability coverage and portrayals. The "Guidelines" are also referenced twice in the American Psychological Association's Publication Manual (4th Edition). Golden will serve as Information Systems Manager and direct D-1 which is the development of the interactive and searchable disability research information database. Mr Golden is Training Director for the Research and Training Center on Independent Living, and past chair of the training committee of the National Association of Rehabilitation Research and Training Centers. James (Jim) Budde brings over 30 years of project management and rehabilitation research experience. Budde has pioneered technology for CIL evaluation and was directly involved in the development of the CIL standards. His expertise in management, evaluation, research, and university relations will be used to 1) coordinate grants management functions through the University and NI on Disability, 2) provide critical evaluation and management information, 3) promote quality management and future planning, 4) ensure accountability across the center, and 5) direct the longitudinal (R-3) research project to evaluate Disability research information dissemination and utilization. A portion of the percentage of Budde's time is included in the budget with the University of Kansas providing the greater share in matching funds. Budde will serve as a leader on the Senior Management Team and PI for the Center. Dr. Budde is currently Senior Scientist in the Institute for Life Span Studies and Director of the Research and Training Center on Independent Living at the University of Kansas (iii) The extent to which key personnel are knowledgeable about the methodology and literature of pertinent subject areas (2 points). Knowledge about methodology and literature of pertinent subject areas is evidenced by the literature reviews which accompany research projects and set up the significance of the problem in the introduction section of the narrative. Additionally, the key investigators' curriculum vitae demonstrate ample demonstration of knowledge and application in the fields of disability, independent living, and rehabilitation. Please see Appendix E for copies of the curriculum vitae and resumes of key personnel. Finally, contractual relationship with expert consultants in specific areas also provides additional expertise, as in project R-2, "Research Primer," development, in which an expert research methodologist will provide consultation. (iv) The extent to which key personnel have up-to-date knowledge from research or effective practice in the subject area covered in the priority (1 point). While resumes of key personnel reflect publications and presentations that demonstrate research and effective practices, many of the effective demonstration, dissemination, utilization, technical assistance, and training practices have been pioneered and refined by key personnel. For example, all key personnel have been involved in developing, refining, and using technical assistance and training in the IL field. Work with such practices dates back to over 20 years. More recently technical assistance and training has been provided through teleconferencing, interactive conferencing, WWW pages, and other state-of-the-art practices by key personnel. Brief Biography and Resume The sections below include brief biographical sketches and resumes of the key leaders for this Disability and Rehabilitation Research Projects and center. Full resumes are included in Appendix E. James F. Budde, Ed. D. Overview: Dr. Budde's chief interest is to use practical research and development to provide new and improved options for independent living. He has worked to use research and development to enhance consumer empowerment and independent living over the past 21 years. He was co-founder of the Research and Training Center on Independent Living in 1980 and has been Director since its establishment. Dr. Budde was also co-founder of the Lawrence, Kansas CIL, Independence, Incorporated in 1968. He works actively with CILs across the country and has been a continuous board member and officer of Independence, Incorporated, serving three terms as President. He is past President of the American Association of University Affiliated Programs, the National Association of Independent Living, and the National Association of Rehabilitation Research and Training Centers. Dr. Budde received a Bachelors of Fine Arts in Education from Wayne State College, a Masters of Science from the University of Nebraska, and his doctorate from the University of Kansas. He has worked in private business, public schools, state government, and higher education. He is the author of 42 research publications and IL intervention products. He has provided technical assistance to over 100 CILs and disability organizations, consumer organizations, policy makers, and federal/state agencies. Dr. Budde has managed and conducted more than 20 projects and grants involving Disability research technical assistance, training, and dissemination. Organization: Research and Training Center, University of Kansas Title: Director, Senior Scientist Institution Degree Year Field of Study Wayne State College B.F.E 1962 Business University of Nebraska M.S 1968 Counseling University of Kansas Ed.D. 1976 Ed. Policy /Leadership Recent Employment History: Director; Kansas University Research and Training Center on Independent Living; University of Kansas; Lawrence, Kansas; 1980-present. Associate Director; Kansas University Affiliated Program (Lawrence, Kansas City, and Parsons Centers); University of Kansas; 1991-present. Assistant Director; Gerontology; University of Kansas, Lawrence,
Kansas; 1980-1983. Director; Kansas University Affiliated Facility
(Lawrence Center); University of Kansas; Lawrence, Kansas; 1975-82.
Relevant Publications: Budde, J. F. (1979). Measuring performance in human service systems. New York, NY: American Management Association, ISBN 0-8144-5551-4. Jones, M. L., Hannah, J. K., Fawcett, S. B., Seekins, T., & Budde, J. F. (1984). The Independent living movement: A model for community integration of persons with disabilities. In W. P. Christian, G. T. Hannah, & T. J. Gahns (Eds.), Programming effective human services, pp. 315-335. New York, NY: Plenum Publishing. Barker, L. T., Budde, J. F., & Lachat, M. A. (1986). Comprehensive Evaluation of Title VII, Part B Centers for Independent Living: Final Report. Berkeley, CA: Berkeley Planning Associates. Budde, J. F. (1986). The National Organization for Independent Living: NAIL. Journal of Rehabilitation, 52 (3), 39-43. Budde, J. F., Petty, C. R., Nelson, C., & Couch, R. (June, 1986). Evaluating the impact of independent living centers on consumers and the community. Journal of Rehabilitation, 52 (2), 68-73. Budde, J. F., & Bachelder, J. L. (1986). Independent living: The concept, model, and theory. The Journal of Association for Persons with Severe Handicaps, 11 (4), 240-245. Budde, J. F., Lachat, M. A., Lattimore, J. L., Jones, M. L., & Stolzman, L. (1988). Standards for independent living centers. Lawrence: University of Kansas, Research and Training Center on Independent Living. Seekins, T., Mathews, R. M., Fawcett, S. B., Jones, M. L., &
Budde, J. F. (1988). A market-oriented strategy for applied research
in independent living rehabilitation. Journal of Rehabilitation,
54 (1), 35-38. Budde, J. F., & Stoddard, S., Lattimore, J., & Krause, L. (1988). Rehabilitation Services Administration Minimum Compliance Indicators. Lawrence: University of Kansas, Research and Training Center on Independent Living. Final version to be published in the Federal Register. Lattimore, J., Ulicny, G., Budde, J., & Ludlow, J. H. (1989) RIL (Resources for independent living): A manual and computerized information directory. Lawrence: University of Kansas, Research and Training Center on Independent Living. Eakins, D., Budde, J. F., Lattimore, J., (1989). Indicators +1: A computerized information system for independent living centers. Lawrence: University of Kansas, Research and Training Center on Independent Living. Budde, J. F., Petty, C. R., & Nelson, C. (1989). Problems and benefits associated with independent living consumer satisfaction evaluation. Journal of Rehabilitation, 55 (4), 62-68 (607). Budde, J. F. (1990). Independent living and aging. In S. Brody & L. G. Pawlson (Eds.), Aging and Rehabilitation II, pp. 57-73. New York, NY: Springer Publishing., ISBN 0-8261-7080-3. Budde, J. F., Feighny, K., White, G. W., Altus, D., & Snyder, J. (1994) Consumer Control: To command control and achieve goals. Lawrence: University of Kansas, Research and Training Center on Independent Living. Budde, J. F., Youngbauer, J., & Altus, D. (1997). Independent living and underserved consumers with mental retardation, Volume II, Underserved Population Monograph Series. Lawrence: University of Kansas, Research and Training Center on Independent Living. Related Grants: Budde, J. F., Research and Training Center on Independent Living/ Underserved, National Institute on Disability and Rehabilitation Research, 1993-present. Budde, J. F., Harbert, T. A Study of Policies and Procedures that Facilitate Discharge Placement in Less Costly and More Independent Living Alternatives, Department of Veteran Affairs, 1991-1992. Budde, J. F. Increasing Consumer Control and Independent Living Goal Achievement, Rehabilitation Services Administration, 1990-1993. Budde, J. F. Development of Performance Indicators for Independent Living Centers Rehabilitation Services Administration, 1987-1988. Budde, J. F., Development of a Resource Information System for Independent Living, National Institute for Disability and Rehabilitation Research, 1986-1987. Budde, J. F., Research and Training Center on Independent Living, National Institute on Disability and Rehabilitation Research, 1985-1991. Budde, J. F., Research and Training Center on Independent Living, National Institute on Disability and Rehabilitation Research, 1980-1985. Selected Honors or Awards: President, National Association of Rehabilitation Research and Training Centers, 1987-1988. President, National Association of Independent Living, National Rehabilitation Association Division, 1985-86. Panel Member, Independent Living Consensus Forum for the National Council on the Handicapped, 1985. President, American Association of University Affiliated Programs,
1981-82. Lex Frieden, M.A. Overview: Lex Frieden is Senior Vice President at The Institute for Rehabilitation and Research (TIRR) in Houston, Texas. TIRR a comprehensive medical rehabilitation center which provides clinical, educational, and research programs pertaining to spinal cord and brain injuries and other disabling conditions. He is also Director of TIRR's Independent Living Research Utilization Program and Professor of Physical Medicine and Rehabilitation at Baylor College of Medicine. From 1984 to 1988, Mr. Frieden served as Executive Director of the National Council on the Handicapped (now the National Council on Disability), an independent Federal agency located in Washington, D.C. In this capacity, he was instrumental in conceiving and drafting the recently enacted Americans with Disabilities Act (ADA). A graduate of Tulsa University, Mr. Frieden has been honored as a Distinguished Alumnus. He also holds a master's degree in social psychology from the University of Houston. He has done additional graduate work in rehabilitation psychology at the University of Houston with support from an SRS doctoral fellowship, and he has been awarded a World Rehabilitation Fund Fellowship to study programs for people with disabilities in Europe. Currently, he is Vice President for North America of Rehabilitation International, and he serves as a member of the United Nations Panel of Experts on the Standard Rules for Disability. Mr. Frieden, a quadriplegic due to spinal cord injury, has been involved in the organization of several groups of disabled individuals including the American Coalition of Citizens with Disabilities, the Coalition of Texans with Disabilities, and the Houston Coalition for Barrier Free Living. He is presently Chairman of the American Association of People with Disabilities (AAPD). Working in the independent living movement by severely disabled people since the early 1970s, Mr. Frieden has published several books and papers on independent living. He served as a consultant panel member for the United States House of Representatives' Committee on Science and Technology from 1976 through 1978, and he prepared the background paper on Community and Residential Based Housing for the White House Conference on Handicapped Individuals in 1977. From 1989 to 1990, he represented the United States on a disability and employment panel at the Organization for Economic Cooperation and Development in Paris, France He has received two Presidential Citations for his work in the field of disability, and he was honored by the U.S. Jaycees in 1983 as one of America's Ten Outstanding Young Men. Organization: Independent Living Research Utilization Program, TIRR--The Institute for Rehabilitation and Research Title: Director Institution Degree Year Field of Study University of Tulsa, Tulsa, OK B.S. 1971 Psychology University
of Houston, Houston, TX M.A. 1979 Social Psychology Baylor College
of Medicine, Houston, TX None 1972-74 Rehabilitation (Research Intern)
University of Houston, Houston, TX None 1974-75 Psychology (Teaching
Fellow) Recent Employment History: Professor, Department of Physical Medicine and Rehabilitation; Baylor College of Medicine; Houston, Texas, 1995-Present Clinical Associate Professor; Department of Physical Medicine and Rehabilitation; Baylor College of Medicine; 1993-1995 Clinical Associate Professor; Department of Community Medicine; Baylor College of Medicine; 1993-Present The Institute for Rehabilitation and Research (TIRR), Houston, Texas, Senior Vice President for Grants Administration, 1991-Present TIRR Foundation, Houston, Texas, Executive Director, 1988-1991 Assistant Professor; Department of Rehabilitation; Baylor College of Medicine; 1980-1991 National Council on the Handicapped, Washington DC, Executive Director, 1984-1988 Visiting Scholar; Human Service Administration Program; Cornell University; 1981 TIRR Independent Living Research Utilization Program, Houston, Texas, Director and Co-founder, 1979-1984. Research Instructor; Department of Rehabilitation; Baylor College of Medicine; 1978-1980 TIRR New Options Project, Houston, Texas, Research Director, 1976-1980 Relevant Publications: Smith, L. W., Smith, Q. W., Richards, L., Frieden, L., & King, K. (Spring, 1994) Independent Living Centers: Moving Into The 21st Century. American Rehabilitation, 20 (1), pp. 14-22. Frieden, L. (July-August, 1978). Independent Living: The movement and Its Programs. American Rehabilitation, 3 (6), pp. 6-9. Frieden, L., & Richards, L. (1979) Independent Living: Choosing From a Variety of Programs. Disabled USA, 2 (9), pp. 11-14. Frieden, L. (July-August, 1980) Independent Living Program Models. Rehabilitation Literature, 41 (7-8), pp.169-173. Frieden, L. (Fall/Winter, 1981). Independent Living in the U.S. and Implications for Other Countries. Rehabilitation World, pp. 10-14. Frieden, L. & Cole, J. (November, 1985). Independence: The Ultimate Goal of Rehabilitation. American Journal of Occupational Therapy, 39 (11), pp. 734-739. Richards, L. & Frieden, L. (Spring, 1992). Introduction to Rural Independent Living. Rural Special Education Quarterly, 11 (1), pp. 3-5. Wilkinson, W., Frieden, L., & Smith, Q. (Winter, 1994). Implications of the Americans with Disabilities Act for Training of Independent Living Personnel. Rehabilitation Education, 8 (1), pp. 47-58. Related Grants: Director, ILRU Research and Training Center in Independent Living, 6/93-9/95, Estimated Total Project Funding $2.8 million, NI on Disability Grant #H133B0008 Director, Southwest Disability and Business Technical Assistance Center, 10/91-9/96, Estimated Total Project Funding $1.8 million, NI on Disability Grant #H133D10131 National Program Director, Improving Service Systems for People with Disabilities, 6/89-5/95, Estimated Total Project Funding $2.3 million, Robert Wood Johnson Foundation Grant #22630 Several Smaller research and demonstration projects with funding totaling roughly $1 million. Selected Honors or Awards: Presidential Citations for Distinguished Service from President
Reagan (1988) and President Bush (1990). Gold Key (Highest Honor)
by the American Congress of Rehabilitation Medicine, 1994, Selected
Phi Beta Kappa Alumnus of Beta Oklahoma Chapter at the University
of Tulsa,1994 Glen W. White, Ph.D. Overview: Glen W. White, Ph.D., a spinal cord injured person since 1964, has been involved in the rehabilitation and independent living field for over 27 years. As Co-Director of the Research and Training Center on Independent Living at the University of Kansas, Dr. White has had numerous opportunities to conduct local, state, and national research and training with participants who have disabilities. He has conducted research in the areas of health promotion and prevention of secondary conditions for people with disabilities, developing community support for Independent living centers, and advocacy skill training for people with disabilities. Dr. White has served on numerous local, state, and national organizations dealing with disability issues currently he is President of the National Association of Rehabilitation Research and Training Centers (NARRTC). He recently completed work as a committee member of the Institute of Medicine Committee at the National Academy of Sciences, which has recently released Enabling America: Assessing Rehabilitation Science and Engineering. Currently Dr. White serves as an Associate Professor in the Department of Human Development and Family Life, at the University of Kansas. At the university he directs the Research Group on Rehabilitation and Independent Living, which serves as the think tank and working group for several doctoral students committed to research in the area of rehabilitation and independent living. Dr. White also teaches in the areas of community psychology, applied behavior analysis, and disability studies. Organization: Associate Professor; Research and Training Center on Independent Living, University of Kansas Title: Associate Director and Associate Scientist; Associate Professor in HDFL Institution Degree Year Field of Study Winona State University B.S. 1973 Psychology/Sociology Winona State University M.S. 1980 Ed. Psych. & Counseling University of Kansas M.A. 1988 Developmental Psychology University of Kansas Ph.D 1991 Developmental Psychology Program emphasis on Rehabilitation and Independent Living Recent Employment History: Assistant Professor, Department of Human Development and Family Life, University of Kansas; Lawrence, KS; 1991-1998. Associate Professor, Department of Human Development and Family Life, University of Kansas; Lawrence, KS; 1998-present. Co-Director, Research and Training Center on Independent Living - Underserved Populations; University of Kansas, Lawrence, KS; 1991-present. Research Associate and Associate Scientist, Richard L. Schieffelbush Institute for Life-Span Studies, University of Kansas; 1991-present. Recent Publications: Fawcett, S. B., White, G. W., Balcazar, F. E., Suarez-Balcazar, Y., Mathews, R. M., Paine, A. L., Seekins, T., & Smith, J. F. (1994). A contextural-behavioral model of empowerment: Case studies with people with disabilities. American Journal of Community Psychology, 22 (4), 471-496. White, G. W., Paine-Andrews, A. L., Mathews, R. M., & Fawcett, S. B. (1995). Home access modifications: Their effects on community visits of people with physical disabilities. Journal of Applied Behavior Analysis, 28 (4), 457-463. White, G. W., Seekins, T., & Gutierrez, R. T. (1996). Preventing and managing secondary conditions: A proposed role for independent living centers. Journal of Rehabilitation, 62 (3), 14-21. White, G. W., Thomson, R., & Nary, D. E. (1997). An empirical analysis of the effects of a self-administered advocacy letter training program. Rehabilitation Counseling Bulletin, 41 (2), 74-87. White, G. W. (1997). Introduction to the special feature. The Community Psychologist, 30 (1), 9-11. Nary, D. E., White, G. W., & Thomson, R. (1997). The Action Letter Portfolio: Advocacy training for community change. The Community Psychologist, 30 (1), 14-15. Gutierrez, R., Froehlich, K. & White, G. W. (1997). Empowering people with head injuries to influence policy decisions. The Community Psychologist, 30 (1), 26-27. White, G. W., & White, N. L. (1993). The adoptive process: Challenges and opportunities for people with disabilities. In F. P. Haseltine, S. S. Cole, and D. B. Gray (Eds.), Reproductive issues for persons with physical disabilities (pp.107-115). Baltimore, MA: Brookes Publishing. Fawcett, S. B., Suarez de Balcazar, Y., Balcazar, F. E., White, G. W., Paine, A. L., Blanchard, K. A., & Embree, M. G. (1994). Conducting intervention research: The design and development process. In J. Rothman & E. J. Thomas (Eds.), Intervention research: Design and development for human service. (pp. 25-54). New York, NY: Haworth Press. White, G. W., & Fawcett, S. B. (in press). Independent living and people with disabilities. In J. Rappaport & E. Seidman (Eds.), Handbook of Community Psychology. New York, NY: Plenum Publications. A. Pope & E. Bryant (Eds.) (1997). Enabling America: Assessing Rehabilitation Science and Engineering. Washington, DC: Institute of Medicine, National Academy of Sciences. Served as one of 16 invited IOM Committee Members who co-wrote this book. Related Grants: Co-Principal Investigator, "Preventing and managing secondary conditions: Building on independent living models of self help and personal responsibility," U.S. Centers for Disease Control and Prevention, 1991-1993. Co-Principal Investigator, "Research and Training Center on Independent Living for Underserved Populations," Department of Education, National Institute on Disability and Rehabilitation Research, 1993-1998. Principal Investigator, New Faculty Award. "An empirical analysis of advocacy skills training," University of Kansas,1994. Principal Investigator, "Translation of secondary condition training materials into Spanish." Paralyzed Veterans of America, Educational and Training Foundation, 1994-1995. Principal Investigator, "Health promotion for women with physical disabilities," University of Kansas, Research Development Fund, 1997-1998. Principal Investigator, "Award supplement for research on mammography screening for women with physical disabilities: Health promotion for persons with disabilities and prevention of secondary conditions," Research and Demonstration Grant from the Office on Disability and Health, U.S. Centers for Disease Control and Prevention, 1997-1998. Principal Investigator, "Health promotion for persons with disabilities and prevention of secondary conditions," Research and Demonstration Grant from the Office on Disability and Health, U.S. Centers for Disease Control and Prevention, 1997-2000. Co-Principal Investigator, "Cost effectiveness analysis of a community health promotion initiative," Research and Demonstration Grant from the Office on Disability and Health, U.S. Centers for Disease Control and Prevention, 1997-2000. Principal Investigator, "State capacity building project: Assessing health outcomes of recipients of the physical disabilities waiver program," Subcontract from the Kansas Department of Health and Environment and part of an overall award from a state capacity-building grant from the Office on Disability and Health, U.S. Centers for Disease Control and Prevention, 1997-2001. Principal Investigator, "Conference on secondary conditions among
people from minority cultures." Conference Grant from the Office
on Disability and Health, U.S. Centers for Disease Control and Prevention,
1998-1999. Ken Golden, M.A. Overview: Ken Golden's chief interest is applying computer-based training and information technology to independent living. He is pursuing a degree in computer programming and primarily is studying Visual Basic and C++. In addition, he is the web master for the Research and Training Center on Independent Living. He is a person with paraplegia since 1990. He was a consumer volunteer at the CIL, Independence Incorporated, from 1990-91. From 1991 to 1998, he was a board member and served six consecutive years as president of the board. He was also member of National Association of Rehabilitation Research and Training board and served four years as the chairman of the Training Committee. He is member of DIMENET's editorial board for three years. Finally, he has served three years on the US Commission on Civil Rights' State Advisory Committee. Organization: Research and Training Center on Independent Living Title: Training Coordinator Institution Degree Year Field of Study Johnson County Community College A.A. in progress Computer Programming University of Kansas M.A. 1992 Political Science University of Kansas M.A. 1991 Russ/East European Studies University of Southern Colorado B.A. 1984 History/German Minor Lamar Community College A.A. 1981 Liberal Arts Recent Employment History: Training Coordinator, Research and Training Center on Independent Living, University of Kansas, Lawrence, KS 1993 to present. Project Coordinator, Research and Training Center on Independent Living, University of Kansas, Lawrence, KS 1992 to 1995. Relevant Publications: Seekins, T., White, G.W., Ravesloot, C., Young, Q-R., Lpez, J. C., Golden, K., Norris, K. & Szalda-Petree, A. (1995). Rural Facts: Rural health and disability. Missoula: University of Montana, Rural Institute on Disabilities. Seekins, T., White, G.W., Ravesloot, C., Young, Q-R., Lpez, J. C., Golden, K., Norris, K. & Szalda-Petree, A. (1995). Cost containment through disability prevention: preliminary results of a health promotion workshop for people with physical disabilities. Missoula: University of Montana, Rural Institute on Disabilities. Golden, K., & RTC/IL Staff. (1996). Guidelines for writing and reporting about people with disabilities. Lawrence: University of Kansas, Research and Training Center on Independent Living. Golden, K. (1996 to present). RTC/IL [Web page], Available web address: www.lsi.ukans.edu/rtcil/rtcil.htm Lopez, J.C., Golden, W., White, G., Steward, J., & Seekins, T. (in press). Risk factors for secondary conditions in people with spinal cord injury. Related Grants: Golden, K., (1998). Choices: Consumers' Guide to Rehabilitation. Education and Training Foundation, Paralyzed Veterans of America. Laurel Richards Overview: A member of ILRU since 1978, Richards serves as director of training for the ILRU Research and Training Center on Independent Living at TIRR and is a member of the Senior Management Team for IL NET, the national independent living training and technical assistance project. She has primary responsibility for development of resource materials, including serving as editor of the ILRU Insights newsletter, Issues in Independent Living monograph series, Staying On Track CIL management handbook, Readings in Independent Living series, and the IL Information You Can Use series of fact sheets. With Quentin Smith, she developed and conducted an innovative management training program directed toward executive directors and middle managers of independent living centers. With the help of Laurie Gerken Redd, Richards established a national network of technical assistants for independent living in 1985. The network consists of over 100 individuals available to provide consultation and technical assistance in all aspects of independent living center operations, disability rights, and the Americans with Disabilities Act--facilitating peer support networking among people working in the independent living field. The ILRU Network of Technical Assistants for IL is now available in an on-line, searchable database (www.DIMENET.com/ilruta). Organization: Independent Living Research Utilization Title: Training Director Institution Degree Year Field of Study University of North Carolina, Asheville B.A. 1970 Literature University of Houston 1974 English (Thesis Incomplete) Recent Employment History: Director of Training; Independent Living Research Utilization (ILRU) Program; The Institute for Rehabilitation and Research; 1985-Present. Project Director; National Independent Living Development and Support Network; 1994- Present. Project Director; ILRU Management Training Project for Independent Living Center Executive Directors; 1989-Present. Director of Training; ILRU Research and Training Center on Independent Living at TIRR; 1985- Present. Project Director; ILRU Management Training Project for Independent Living Center Middle Managers; 1987 û 1990. Project Director; ILRU Management Training for Independent Living Center Executive Directors; 1984 û 1987. Training and Materials Development Coordinator; ILRU Program; TIRR; 1977 û 1985. Selected Publications: Richards, L., Smith, Q., Redd, L., Dresden, C., & Frieden, L. (1982-1996). ILRU Insights: A National Newsletter for Independent Living. Vols. 1-14. Richards, L., Herzog, S., McAllister, A., Heinsohn, D., & Zhu, Y. (1979-1998). Directory of Centers, SILCS, & Related Organizations. Houston, TX: ILRU. Michaels, R., Kailes, J. I., Richards, L., & Dresden, C. (1995). Standards and More: Beyond Compliance, IL NETWORK: National Training and Technical Assistance Project Training Manual. Houston, TX: ILRU. Rennick, V., House, R., Jones, D., Richards, L., Smith, Q., & Dresden, C. (Eds.). (1995). Expanding Your Management Foundation: Readings in Management Literature--Financial Management. Houston, TX: ILRU. House, R., Rennick, V., Jones, D., Richards, L., & Dresden, C. (In press). Expanding Your Management Foundation: Readings in Management Literature--Basic Supervision Houston, TX: ILRU. House, R., Rennick, V., Jones, D., Richards, L., & Dresden, C. . (In press). Expanding Your Management Foundation: Readings in Management Literature--Hiring, Diversity, and More. Houston, TX: ILRU. Kailes, J., Michaels, R., Dresden, C., Heinsohn, D., Richards, L., Shepard, R., Lin, R., & Hughey, A. (1997). Taking Charge: Leadership and Systems Advocacy. Houston, TX: ILRU. Michaels, R., McDonald, G., Dresden, C., Heinsohn, D., Richards, L., Shepard, R., Lin, R., & Hughey, A. (1997). The SILC Difference: "Yes, You Can!" Houston, TX: ILRU. Michaels, R., Kailes J., Richards L., & Dresden C. (1995). Standards & More: Beyond Compliance. Houston, TX: ILRU Program. Richards, L., Dresden, C., Heinsohn, D., McAllister, A., Shepard, R., Shore, G., & Kemp-Moye, D. (1995). Developing the Three-Year Plan: A National Teleconference on Independent Living. Houston, TX: ILRU. Smith, Q., Frieden, L., and Richards, L. (1995). Independent Living. Encyclopedia of Disability and Rehabilitation. New York, NY: Simon and Schuster. Denk, J., Shreve, M., Richards, L., King, K., Smith, L., & Smith, Q. (1994). Applying marketing principles. Staying on Track: ILRU Management Support Series. Houston, TX: ILRU. Smith, Q.W., Richards, L., Redd, L.G., & Frieden, L. (1994). Improving management effectiveness in independent living centers through research and training. OSERS, 6 (2). Smith, L.W., Smith, Q.W., Richards, L., Frieden, L., & King, K. (Spring 1994). Independent living centers: Moving into the 21st century. American Rehabilitation, 20 (1), 14-22. Michaels, B., Kailes, J., Richards, L., Dresden, C., Heinsohn, D., Hughey, A., & Kemp-Moye, D. (1995). Frequently Asked Questions About the Rehab Act and the Role of the SILC. Redd, L., Richards, L., Dresden, C., Sykes, R., & Spooner, P. (1995). Accessing the 'ILRU Job Bank' through DIMENETûInstructions for Newbies. Richards, L. (1995). Information You Can Use: Funding Opportunities. Michaels, B., Kailes, J., Richards, L., Dresden, C., Heinsohn, D., Hughey, A., & Kemp-Moye, D. (1995). Information You Can Use: Statewide Independent Living Councils--7 Fact Sheets. Michaels, B., Kailes, J., Richards, L., Dresden, C., Heinsohn, D., Hughey, A., & Kemp-Moye, D. (1996). Information You Can Use: The Rehabilitation Act--4 Fact Sheets. Michaels, B. & Richards, L. (1997). Frequently Asked Questions--Lobbying. Yeager, P., Richards, L., & Redd, L. (1998). Getting the Most Out of Consultation Services. Michaels, B., Richards, L. Dresden, C., & Heinsohn, D. (1998). Frequently Asked Questions About Lobbying and CILS--Revised. Appointments: Member, Rehabilitation Act Subcommittee, National Council for Independent Living (NCIL); 1991-Present. Member, Fund-raising Committee, NCIL; 1994. Member, Editorial Committee, DIMENET Computer Network; 1993-Present.
. Carri L. George Overview: Carri George has worked in the Independent Living movement for 15 years. She was the director of Volar Center for Independent Living in El Paso, Texas, for four years before coming to ILRU in 1998. She earned her Bachelor of Arts degree at the College of William and Mary. Ms. George serves as the Regional Representative for Region VI on the board of the National Council on Independent Living. Organization: Independent Living Research Utilization Title: Project Associate Institution Degree Year Field of Study College of William and Mary B.A. 1981 English University of Texas at El Paso M.A. in progress Professional Writing & Rhetoric Recent Employment History: Project Associate; Independent Living Research Utilization; Houston, Texas; April 1998-Present. Director; Volar Center for Independent Living; El Paso, Texas; 1994-1998. Programs Coordinator; Volar Center for Independent Living; El Paso, Texas; 1991-1994. Outreach/Information & Referral Coordinator; Volar Center for Independent Living; El Paso, Texas; 1985-1991. Advocacy/Outreach Coordinator; Volar Center for Independent Living; El Paso, Texas; 1984-1985. Staff Writer/ Photographer; El Paso Community College; El Paso Texas; 1981-1983. (m) Adequacy and Accessibility of Resources (4 total points). (i) The extent to which the applicant is committed to provide adequate facilities, equipment, other resources, including administrative support (2 points). Facilities The Kansas Board of Regents designated the RTC/IL as a major University Research Center in 1980. In June of 1990, the Center moved into the Robert Dole Human Development Center. The Dole Center includes 115,000 square feet of research and training space of which 3,420 square feet is permanently assigned to the RTC/IL. This space encompasses four large center suites, specifically configured for the Center's use, including two research suites, one training suite, and one administrative suite. This will provide adequate space for the DRIC, for expansion of related projects. All Center space adheres to current ADAAG guidelines and is completely barrier-free. While the RTC/IL has discrete space, it also has access to common space for interdisciplinary research, training, management and leadership functions. Common space includes large conference rooms, media rooms, computer rooms, presentation rooms, classrooms, and reception areas. The ILRU program is located in fully-accessible, commercial office complex near downtown Houston, Texas. The complex includes offices, conference rooms, common work areas, and reception areas. There is adequate space for project staff and work activities for this proposed DRRP. Equipment Computers are available and used extensively to increase production and reduce costs. All staff members have computers that are used for word processing, telecommunications, statistics, graphics, e-mail, Internet access, data management, and numerous other uses. The RTC/IL is part of a local area network (DoleNet) that is part of the Schiefelbusch Life Span Institute (LSI). This network is managed by the Computer Application Unit (CAU) of the LSI. The network includes a dedicated web server that provides numerous software packages shared on the network, and access to the university network system, and access to the World Wide Web (WWW) 24 hours a day. The Center's website is located on this server (http://www.lsi.ukans/rtcil.htm). The RTC/IL's website is accessible to people with visual disabilities using the Web Accessibility Initiative (WAI) guidelines. The RTC/IL has desktop publishing software that has been used to publish a variety of products. In addition, the Center has the capability for web design and software development. The Center has recently produced two consumer-targeted software programs on goal setting and risk reduction of secondary conditions. The Center also has a full range of audio-video equipment and a media publishing system that includes a color scanner and printer. The library offers a concentration of disability policy and IL literature including current, professional journals and consumer periodicals. Some of the Center's major equipment include 1 telecommunication device for the deaf (TDD), 20 Pentium-grade IBM-compatible computers, 3 Pentium-grade IBM-compatible laptop computers, a portable printer, 12 laser printers, 1 overhead projector, one video camera, one VCR, one monitor, 1 carousel slide projector, 3 copy machines, a binding machine, and a FAX machine. Because all Center computers are IBM-compatible, text files and data can be easily shared among Center staff. The ILRU office is equipped with IBM-compatible Pentium microcomputers and a state-of-the-art local area network. The local network is online 24-hours per day via T1 connection to Baylor College of Medicine's internet and e-mail services, with direct backbone linkages to both Internet 1 and 2. The Baylor Computing Resource Center (CRC) provides network support. ILRU currently operates an elaborate, high-traffic World Wide Web site (http://www.ilru.org) using Baylor College of Medicine's newest, high-speed servers. ILRU also supports the operation of DIMENET, the only consumer-controlled, fully accessible, national computer network address the needs of people with disabilities. ILRU has high speed copying equipment, scanning capabilities, and other resources needed for production of resource materials. TDDs are available for communicating with individuals who have hearing or speech-related disabilities. Also, working relationships are in place with local vendors who provide on-call braille material, as well as videotaped material with open or closed captioning. Other Resources Including Administrative Support The LSI at the University of Kansas was created, in part, because of the growing national realization that all Americans, disabled or not, are living longer and that their developmental problems at any age affect families and communities as well as individuals. The LSI facilitates life span research, service projects, and training programs conducted by investigators who study human developmental, family, and independent living issues. The LSI provides opportunities for scientists of diverse disciplines (and a broad range of professional specialties) to unite in the study of the human developmental cycle from birth through aging. Support services provided by the LSI include the following Computer Applications Unit (CAU). Each major setting and satellite setting of the LSI includes an array of microcomputers connected by a local area network (LAN). The CAU maintains a staff of programmer/analysts, network support staff, electronics technicians, and clerical help. This staff provides services for all settings and supports approximately 200 microcomputers located at LSI sites in Lawrence, Parsons, and Kansas City. The microcomputers supported by the CAU communicate with the KU central computers through one of the KU networks by direct Ethernet connections or through modems. Communications. The LSI maintains a staff of professional video production personnel (including sound engineers and graphics artists) to support research and clinical training activities. The LSI has internal availability, or has access to, the technical and artistic talent and equipment necessary to produce professional videotaped programs and printed publications. Media services facilities are located in the Kansas University Affiliated Program (KUAP) building in Parsons and in the Dole Human Development Center in Lawrence. The videotape production facility is at Parsons and comprises a sound studio, production staff and equipment. The media and communications program provides quality production in almost all existing media formats for scientific and public information dissemination. Research Design and Analysis. The Research Design and Analysis Unit (RDA) advises LSI scientists on research design, measurement, and selection of appropriate statistical techniques, as well as data management. It also coordinates a consortium of faculty statistical consultants who provide their expertise to LSI associates at every stage of the research process from grant writing through implementation and final report preparation. The RDA Unit also provides opportunities for updating quantitative skills through workshops, seminars, and brown-bag sessions. Project Development. Activities in the LSI provide an umbrella for a broad array of innovations that foster an expanding research program based on quality and substance. The LSI Director's staff includes project development personnel to assist in preparing, processing and submitting applications for sponsored research. The procedure is streamlined to make this service convenient and efficient for investigators. The Associate Director for Project Development works with the investigator to prepare budgets, satisfy State and Federal requirements that apply to applications, and adhere to University submission requirements. Grants Management and Administration. The Associate Director for Finance and Administration directs a cadre of administrative staff, accountants, and bookkeepers who are responsible for the computer-based accounting and reporting system involving the receipt and disbursement of State and Federal grant funds. The Associate Director for Finance and Administration insures that all State and Federal guidelines are followed, that funds are disbursed according to regulations, and that the resources of the LSI are up-to-date and are used effectively and efficiently. These internal resources ensure that regular progress reports submitted to Federal funding agencies are produced in a timely manner. The broader University community offers many additional resources for research and training. Long known for its commitment to academic excellence, the University of Kansas considers research an integral part of the educational process. The University has more than 40 special research facilities in addition to those in individual departments and schools. The University is classified by the National Science Foundation as a major research university. Current enrollment at the University of Kansas is over 27,000 with 1,900 faculty members. The Graduate School, with current enrollment of 5,700 students, offers doctoral degrees in 51 fields. The University's modern library system contains over 3 million items. The University of Kansas maintains a variety of state-of-the-art computing facilities, providing extensive support for research. Several Digital Alpha-based central computing platforms are available to research users. The University also hosts the Kansas Center for Advanced Scientific Computing, with a 16-processor Silicon Graphics/Cray Origin 2000 supercomputer. The University of Kansas was an early participant in the Internet, and is a founding member of the Great Plains Network, which will multiply the University's Internet bandwidth beginning in the Fall of 1998. The University is also an active member of the Internet II project. There is an extensive campus network, built around an ATM backbone. In addition, the University Printing Service provides offset reproduction, binding, mailing, and high-quality photocopying. Administratively, ILRU is a program of TIRR (The Institute of Rehabilitation and Research), which conducts an extensive array of clinical, research, and education programs related to rehabilitation medicine, disability policy, and independent living. TIRR maintains affiliations with Baylor College of Medicine, the University of Texas Health Science Center, the Medical Branch at the University of Houston, Rice University, and other academic institutions. TIRR has been recognized in each of the past 10 years as one of America's top 10 rehabilitation hospitals by U.S. News and World Report. (ii) Accessible Facilities, Equipment, and Other Resources for Individuals With Disabilities (2 points). The Dole Center at KU includes 115,000 square feet of space that has been specifically designed to set a standard for accessibility for all persons regardless of their age. This not only includes architectural design, but equipment and telecommunications design. Center staff with disabilities served on the University Architectural Barrier Committee to ensure that architects and builders created a building that has full exterior and interior accessibility. In addition to structural access, the Center has provided a number of special accommodations for staff and students. These accommodations include specially built desks for wheelchair users, computer scanners, voice synthesizers, telephones with Braille keypads, and voice-activated headsets. A strong center commitment to a barrier-free environment, and staff with disabilities continue to advocate for full accessibility within the LSI and across the KU campus. All the facilities at the ILRU program and The Institute for Rehabilitation and Research are fully accessible, exceeding all local, state, and federal rules and guidelines. The ILRU program is the site of one of ten federally-designated technical assistance centers on the ADA. Technical assistance on accessibility is provided by ILRU to individuals and organizations throughout the Southwest United States.
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The complete ILRU Web site was developed with support from grants from the Department of Education. However, its contents and the opinions expressed do not necessarily represent the policy of the Department of Education, and no endorsement by the Department should be assumed. ILRU is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.
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