Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability

Area of Science:

• Disability Studies
• Health Services Research
• Survey Methodology

Background:

• Self-reporting is crucial for understanding the experiences of individuals with intellectual and developmental disability (IDD).
• Assessing the responsiveness of this population to survey questions is essential for valid data collection.
• Previous research highlights challenges in obtaining reliable self-reported data from individuals with IDD.

Purpose of the Study:

• To analyze the responsiveness of adults with IDD to specific interview questions from the National Core Indicators-Adult Consumer Survey (NCI-ACS).
• To identify factors associated with higher responsiveness among individuals with IDD.
• To evaluate the utility of interviewer ratings in assessing participant engagement and understanding.

Main Methods:

• Analysis of 11,391 adult participants' responses to Section 1 of the 2008-2009 NCI-ACS.
• Exclusion of proxy responses to ensure self-reported data.
• Interviewer ratings of participants' understanding, consistent responding, and overall responsiveness were collected.

Main Results:

• Overall responsiveness was 62.1%, with participants rated as understanding questions and responding consistently.
• A significant "all-or-none" response pattern was observed.
• Milder levels of IDD and using speech as the primary communication method were associated with greater responsiveness.

Conclusions:

• Self-reported data collection from adults with IDD is achievable, particularly for those with milder disabilities and speech as their primary communication mode.
• Interviewer assessments of participant understanding and consistency are valuable indicators of responsiveness.
• Findings support the continued use and refinement of self-report measures in IDD research.