Survey Process

Procedures

The NCDDR plan to gather information from consumers with disabilities focused on asking for voluntary help from independent living organizations, including:

• Centers for Independent Living (CILs), funded under Title VII of the Rehabilitation Act of 1973, as amended
• Statewide Independent Living Councils (SILCs) and
• Other independent living programs providing services which may assist people with disabilities in living more independently (ILPs).

Telephone calls were made to administrators to explain the purpose and procedures of the survey, and to ask if they would volunteer to participate. A group of 514 independent living organizations were identified in the Independent Living Research Utilization (ILRU) Directory of independent living centers and related organizations, Vol. 18, January, 1996. The final data base included 502 organizations, as some from the initial list were determined to no longer be functioning. Of these, 117 did not participate for the following reasons:

• some programs listed in the Directory were not independent living centers or SILCs and did not have direct contact with consumers;
• centers located outside the continental US, Hawaii, and Alaska were not contacted;
• direct contact was never made with 30 centers (in some cases messages were left but no response was received, and in other cases phone calls were never answered);
• many of the listings for the SILCs included a second representative, while only one was asked to participate from each state; and
• branch offices for some centers did not participate.

D

A total of 380, or 99%, of the 385 administrators contacted, did volunteer to participate in the survey. Only four administrators did not agree to participate, and one did volunteer but called later to decline due to an increased work load. The independent living organizations represented among the volunteers were: 55% Title VII CILs, 13% SILCs, and 32% other ILPs.

The volunteer administrators were asked to solicit survey responses from a minimum of five consumers with disabilities, or, as appropriate, to designate a representative to administer the surveys. This ensured that respondents were people who receive services or support from the groups contacted and that the anonymity of the consumers was protected. In addition, the administrators were asked to complete a similar survey from the perspective of their role.

Follow-up telephone calls were made, letters were sent to encourage participation, and duplicate packets were sent to volunteers who did not receive the original mailed materials.

Participants

Materials were returned from 70% (265) of the volunteering organizations. A maximum total of 1,900 consumer responses was possible from the 380 organizations that volunteered, and a maximum of 1,325 was expected from the 265 volunteers who actually returned the survey materials. Not all volunteers returned five surveys, while a few returned more than five. A total of 1,170 consumer surveys were received, or 88% of the total projected if all responding organizations had returned five surveys. Over half of the respondents (56%, or 148) did return five consumer surveys. Fewer than five surveys were returned by 38% (100) of the respondents, while 6% (17) returned more than five surveys. Seven of the volunteers did not return any consumer surveys (2%), and only submitted administrator survey forms. An average of 4.6 consumer surveys were received per responding IL organization. Administrator surveys were not returned by 10 (3%) of the volunteering organizations.

All 50 states were represented among the responding independent living organizations. Eleven states had a 100% response rate from all volunteering organizations in the state, and only four states had less than a 50% response rate. Forty-nine states were represented among those that returned five consumer surveys. More than five surveys were returned from 12 states (24%), while respondents from 40 states (80%) returned fewer than five surveys. Sixty percent of the surveys were received from Title VII CILs, 10% from SILCs, and 30% were received from other independent living programs.

A total of 15 Spanish-language consumer surveys were returned from 12 volunteer organizations in 7 states. Five groups from California, two from Texas, and one organization from each of five other states returned surveys in Spanish.

Materials

Each administrator who volunteered to participate in the study received a packet by US Mail. Materials included an overview of the survey purpose and process; five color-coded consumer forms in both English and Spanish, with a bilingual introduction sheet attached to each form; and one color-coded administrator form. If requested, alternate formats were sent, such as large print (two requests), audio tape (two requests), and computer disk (three requests). Also included with the survey materials were NCDDR notepads for respondents, and a postage-paid envelope for returning the survey forms.

Below is an example of the Consumer Survey:

Consumer Survey

(Vea al otro lado para las preguntas en español.)

1. How do you usually get information that you use?
   (Check all that apply. Some examples are given for each answer. Space is provided if you would like to include specific examples.)
   • Popular media (television, radio, movies, videos, etc.)
   • Print media (boos, magazines, newspapers, pamphlets, brochures, etc.)
   • Non-print media (Braille, audio tapes, readers, etc.)
   • Professional people (doctors, lawyers, teachers, caseworkers, etc.)
   • Other people (parents, family, friends, co-workers, etc.)
   • Groups (meetings, workshops, classes, conferences, etc.)
   • Computer (electronic mail, Internet, etc.)
   • Other (Brief description)
2. What ways would you like to get information?
   (Check all that apply.)
   • Regular Print
   • Large Print
   • Braille
   • Audio Tape
   • Video Tape
   • CD-ROM
   • Computer (file/disk)
   • Computer (online)
   • Non-English language: Spanish, Other:
   • Other (Brief description)
3. Do you ever get information from the Internet?
   (Please check one best answer.)
   • Very often
   • Often
   • Only once/twice
   • Never
   • Don't know
4. Is information from disability research useful to you?
   (Please check one best answer.)
   • Yes
   • No
   • Don't Know
5. Do you know how to find information from disability research?
   (Please check one best answer.)
   • Yes
   • No
   • Don't Know

3-97 1.3 National Center for the Dissemination of Disability Research

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NIDRR Project Number: H133A990008
Last Updated: Tuesday, 29 January 2008 at 04:13 PM,
Contents © 1996-2005

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