How Do Consumers Get Information They Can Use?

Is disability research information useful to people with disabilities? If it is, where and how do they find it? Would the information be more useful if it were more accessible? The NCDDR recently conducted a nationwide survey of consumers to find answers to these and other related questions.

While research results generally are available to those who seek them, they are not widely accessible to several critical audiences, namely persons with disabilities, their families, advocates, or direct service providers (Edwards, 1991). There is a critical distinction between availability-which may mean, for example, that a scholarly article may be found in a professional journal, or that a final report will be sent upon request-and accessibility, which implies ease of access and simplicity of comprehension and use. Better understanding of consumers' information-gathering practices and preferences can help those who conduct NIDRR research to make their results more useful and accessible to consumers (SEDL, 1995).

Edwards (1991) notes that finding the proper fit among the dissemination medium, user, and the knowledge or product "includes recognizing that no one channel is always sufficient" (p. 79). The media and formats available for dissemination are increasing rapidly with new technological development. This growth is helpful in meeting the need for numerous and varied dissemination media (SEDL, 1995).

However, it is critical to keep in mind that "consumers continue to lack the basic tools required for accessing what is currently available" (Leung, 1992, p. 293). For example, computers may help 'level the field' of communications, but if consumers with disabilities cannot afford to own computers, this potential is not realized.

In an effort to understand the tools consumers use and prefer, a literature search was undertaken. No literature was identified that directly asked consumers with disabilities how they find and access information that is useful to them. Similarly, an on-line search of the Educational Resources Information Center (ERIC) yielded no citations. The National Rehabilitation Information Center (NARIC), through its REHABADATA on-line database ( http://www.naric.com/services/rehab_connect.cfm), offered four citations focusing on Participatory Action Research as a means of involving consumers in rehabilitation research, but with little emphasis on dissemination and utilization. Newman and Vash (1994) prepared a report for the National Council on Rehabilitation Education. As part of this report, the authors noted that dissemination efforts of NIDRR grantees have been more successful in reaching other professionals than consumers and other audiences.

The purpose of the NCDDR consumer survey was to identify the ways consumers (people with disabilities and their families) find information that is useful to them in their daily lives. These data can be compared with the modes and formats used by NIDRR researchers to determine the degree of match between formats and modes consumers prefer and what researchers typically use.

Who are consumers with disabilities?

It is difficult to comprehensively identify the population of Americans who have physical or mental impairments that limit one or more of life's activities. The Rehabilitation Research and Training Center on Disability Statistics (http://dsc.ucsf.edu/) proposed a figure of 36.1 million, based on the 1990 National Health Interview Survey. The Americans With Disabilities Act of 1990 (Public Law 101-336, 104 Stat. 328) estimated some 43 million people with disabilities. The ADA definition was broadened to include those who have recovered from an impairment in the past, as well as people regarded by others as having an activity-limiting impairment (LaPlante, 1992). Using recent trends in disability rates reported by Keye, LaPlante, Carlson, and Wenger (1997), 15% of the current estimated population of 267,982,550 (U.S. Census Bureau, 1997) would yield 40.2 million persons with disabilities in the United States.

This group—people with disabilities—includes individuals with diverse cultural, socioeconomic, age, and disability characteristics. One thing this heterogeneous group has in common, however, is the need for information to help them in their daily lives. In order to make NIDRR-sponsored disability research information accessible and usable, we must know more about consumers with disabilities and their information needs.

There is no national database of consumers with disabilities from which to draw a sample of individuals to survey. The NCDDR elected to use the loose national network of independent living (IL) organizations to ask the opinions of consumers. Independent living centers, including Title VII-funded Part C Centers for Independent Living (CIL), are community-based and consumer-run organizations. Also included with this group are the Statewide Independent Living Councils (SILC), which foster communication among CILs in each state. The consumers who participate with the CILs, SILCs, and other independent living programs that do not fall under Title VII, are generally individuals who have searched for, found, and are using services in their community. That is the population sampled by this survey activity. Although the survey is limited by the fact that many consumers who have not sought such services are not represented, that is offset by the fact that centers located throughout the country were invited to participate. Responses were received from all 50 states.

The NCDDR staff focused on this group in its initial attempt to identify the information needs and preferences of consumers. If this group, for example, expressed no need for disability research information, what would that imply for individuals with disabilities? If the consumers who participate with independent living organizations do not use the Internet, or do not know how to find disability research information, what would that suggest for the larger, more varied population of people with disabilities as a whole?

Field Test Procedures

A two-part field test activity was used to develop and pilot materials and procedures used for the survey. First, a draft survey instrument was developed to identify the primary formats and modes that consumers prefer as ways to get information. NCDDR staff, a professional researcher, and the members of a focus group of people with disabilities reviewed the consumer survey draft and suggested modifications and additions. The survey instrument was translated into Spanish by NCDDR staff with assistance from staff members of the Southwest Educational Development Laboratory (SEDL) Language and Diversity Program. The survey was modified to gather similar data from independent living organization administrators.

Site visits were made to four CILs located in different geographical regions of the state of Texas to gather first-hand information and impressions from administrators and consumers, and to observe the survey administration process. Different cultural groups, including Anglo (White), Hispanic, and African-American cultures, were represented among staff and consumers at these CILs. Spanish-speaking consumers and staff members were asked to comment on the Spanish translation of the draft consumer survey. A total of 32 consumer responses and 5 administrator responses were received. A report of this field test is available from the NCDDR on request (Report of Field Test Results: Survey of Consumers with Disabilities, October, 1996).

A second field test to pilot the mail-out and return mail procedures was conducted with eight IL centers located in four states. Seven of the volunteer field test sites returned materials and provided feedback on the materials, survey instructions, and procedures. The administrators commented on the need for such information and suggested that most independent living organizations would be eager to participate in the survey activity. A total of 37 consumers and 7 administrators responded. These data, along with the data from the initial field test, were included in the analysis of the data gathered from the survey.

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