How Do Stakeholders Find and Disseminate Information?

During the spring of 1997, NCDDR conducted phase 1 of a nationwide survey. Respondents included 1,238 individuals with disabilities (consumers) who participated in services of independent living centers and other independent living organizations (NCDDR, 1997). Phase 2 of the survey was conducted with stakeholder groups in fall, 1997 and spring, 1998. Later in 1998, phase 3 of the survey will focus on dissemination practices of researchers who receive funds through the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education, Office of Special Education and Rehabilitative Services (OSERS).

For the purposes of the phase 2 survey activity, stakeholder groups are defined as non-NIDRR grantee organizations that provide services or information to people with disabilities and their families. Four categories of stakeholders were surveyed to determine the following: Is disability research useful to stakeholders? If it is, where and how do stakeholders find such information? How do stakeholders disseminate information to their consumers? Are there differences among stakeholder groups in the way they answer these questions?

Who are Stakeholders?

The Americans with Disabilities Act (ADA) of 1990 (Public Law 101-336, 104 Stat. 327) estimated that there are 43 million people with disabilities in the United States. The ADA definition of individuals with disabilities includes anyone who has "a physical or mental impairment that substantially limits one or more of the individual's major life activities; a record of this impairment; or is regarded as having this impairment" (Authority: Section 7(8)(B); 29 U.S.C. 706(8)(B)). With the large number and variety of people with disabilities, a vast number of organizations work with consumers with disabilities, and it would not be feasible in phase 2 to survey each one.

For the purposes of this phase 2 survey, four broad categories of stakeholders were identified as participants to ensure that a wide variety of perspectives were represented: rehabilitation researchers (excluding those funded through NIDRR, who will be surveyed in phase 3), service providers, supporters, and policymakers/information sources. Across these four broad categories, representatives of eight groups were sampled. These groups vary in their purpose and size, and are not strictly comparable with each other. However, it is of interest to examine the data for similarities and differences among the groups. The survey results are presented both in aggregate form and by individual stakeholder group. The four broad categories, the groups within each category, and the sampling procedures are described in the following section.

Stakeholder Groups and Sampling Procedures

Rehabilitation Researchers were represented by a sample of the membership of the Rehabilitative Engineering and Assistive Technology Society of North America (RESNA). Many RESNA members conduct research in areas related to disability, rehabilitation, and special education. A random selection process was used to identify a sample from the 1996 RESNA membership list of approximately 2,000 names. The sample was obtained by using a random numbers table to choose a beginning point on the membership list and then selecting every twentieth member. Many of the members of RESNA were also NIDRR grantees who may participate in phase 3 of our study, and were excluded from this sample. The final RESNA sample included 82 individuals who represented about five percent of the eligible RESNA membership.

Service Providers include two stakeholder groups that provide direct services to people with disabilities and their families. The first is administrators of independent living organizations, including Title VII-funded Part C Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other independent living programs. Administrators from all the groups listed in the Independent Living Research Utilization (ILRU) Directory of Independent Living Centers and Related Organizations, Vol. 18, January 1996, excluding those located outside the 50 United States and the District of Columbia, were contacted by telephone and asked to participate. Contact was made with a total of 385 organizations, and 380 administrators volunteered to participate. Responses were collected from this sample to coincide with the sampling of consumers of independent living organizations during phase 1.

The second group included in the service provider category is health care providers, represented by administrators of acute and post-acute medical rehabilitation facilities. A random sample of 169 rehabilitation facilities was drawn from a listing in The Complete Directory for People with Disabilities (1996). The listing included 1,338 facilities. The sample was obtained using a random numbers table to choose a beginning point on the membership list and then selecting every eighth entry. Surveys were sent to administrators of 57 acute and 112 post-acute facilities.

The NCDDR planned to sample directors of state vocational rehabilitation agencies as part of the service provider category in the phase 2 stakeholder survey. Approval was not granted through the Council of State Administrators of Vocational Rehabilitation (CSAVR) to administer the survey and, therefore, state vocational rehabilitation agencies are not represented among the stakeholder groups.

Supporters include organizations that advocate for and assist consumers with disabilities. Supporters were represented by Client Assistance Programs (CAPs) and Advocacy and Protection Agencies (APAs) located throughout the country. Telephone calls were made to the administrators of CAPs and APAs to describe the study and ask for volunteers to participate in the survey. In some states, the CAP and APA were operated by the same agency, and only one was asked to participate in the survey. Questionnaires were sent to a total of 32 CAPS and 48 APAs.

Policymakers/Information Sources are stakeholders that affect the lives of people with disabilities and their families through making and implementing policy, and through sharing information about people with disabilities and about research outcomes. Four different groups were included for sampling in this category:

1. State Directors of Special Education
   A list of all State Directors was obtained from the National Association of State Directors of Special Education (NASDSE). The sample population included the directors of special education in the 50 United States, plus the District of Columbia, Department of Defense Dependents Schools, and the Bureau of Indian Affairs (BIA) Schools. The state directors were contacted by telephone and invited to participate. Questionnaires were sent to 51 of the 53 directors (vacancies were found at the BIA and Hawaii State Department of Education). A total of 46 state directors volunteered to participate; six were not contacted directly after multiple attempts. Follow-up was conducted by telephone and by mail to those directors who did not respond by the date specified in the contact letter.
2. Legislators and Aides
   Federal legislators who served as members of the Senate Committee on Labor and Human Resources and the House Committee on Education and the Workforce were identified using the Congressional Yellow Book directory (1997). All members of the Senate Committee, and one Representative from each participating state on the House Committee, were contacted through telephone calls to their aides. Messages were left giving an overview and inviting participation in the survey when direct conversations were not possible. The survey was sent to 78 federal legislators and aides.
   The State Yellow Book (1997) was used to identify state legislators who served as Chairs/Vice-chairs of Health and Education committees or subcommittees. The survey was sent to 194 state legislators. This yielded a total of 272 federal and state legislators and aides.
3. Committees on Employment of People with Disabilities
   Questionnaires were sent to 559 officers or other members of state and local Committees. These included Governor's Committees on Employment of People with Disabilities or other state-wide committees (49), Mayor's Committee on Employment of People with Disabilities (218), local ADA Committees (202), and other local groups similar to Mayor's Committees (90). The contacts for the Mayor's and other local committees were obtained through telephone calls to the Governor's committee in each state. The designated representatives of two Governor's Committees had already responded to the survey representing a different stakeholder group, so a second response was not requested.
4. Disability Media
   This sample was identified from America's Telability Media (Winston, 1995) with additional entries from The Complete Directory for People with Disabilities (1996). Surveys were sent to 201 representatives of the disability media, which included journals, magazines, newspapers, radio, and television.

Sampling procedures varied among stakeholder groups and were dependent on the total number of the group population or the clarity of the group definition. In some cases, the stakeholder group was small (e.g., State Directors of Special Education) and it was possible to send surveys to all the representatives in this group. In other cases, the number was large and a random sample was selected (e.g., members of RESNA), or the parameters of the group were not clearly defined (e.g., Disability Media representatives) and a convenience sample was used from available lists of contacts.

In summary, eight stakeholder groups were surveyed within the four general categories of phase 2. The acronym in parentheses following each stakeholder group represents the group identification in the subsequent tables and graphs in the Results section.

1. Members of RESNA (RESNA)
2. Administrators of Independent Living Organizations (IL)
3. Administrators of Medical Rehabilitation Facilities (RF)
4. Directors of Client Assistance Programs/Advocacy and Protection Agencies (CAP/APA)
5. State Directors of Special Education (SDSE)
6. Federal and State Legislators/Aides (LEG)
7. Members of Committees on Employment of People with Disabilities (CEPD)
8. Disability Media Representatives (MEDIA)

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