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Assessing Privacy: What Aspects of Privacy Are Reported and Whose Experiences Are Not Represented?
Seb M Prohn1, Molly Taylor1, Parthenia Dinora1
1Virginia Commonwealth University, Richmond, VA.
Intellectual and Developmental Disabilities
|August 11, 2026
Summary
Privacy assessments are crucial for individuals with intellectual and developmental disabilities (IDD) receiving services. Missing data, particularly for those with severe IDD or using nonverbal communication, hinders community integration and necessitates improved data collection methods.
Area of Science:
- Health Services Research
- Disability Studies
- Social Work
Background:
- Ensuring privacy is a fundamental right for individuals with intellectual and developmental disabilities (IDD) accessing Home and Community-Based Services (HCBS).
- The National Core Indicators (NCI) In-Person Survey is a key instrument for evaluating privacy experiences among individuals with IDD.
- Assessing privacy is essential for promoting autonomy and community inclusion for HCBS recipients.
Purpose of the Study:
- To analyze patterns of missing privacy assessment data from individuals with IDD using the NCI In-Person Survey.
- To identify factors associated with incomplete privacy data collection in this population.
- To highlight the implications of missing data for community integration and advocate for improved assessment methods.
Main Methods:
- Analysis of privacy assessment data from 2,196 individuals with IDD who received HCBS between 2021 and 2023.
- Statistical examination to determine predictors of missing privacy assessment data.
- Focus on demographic and communication factors, including level of intellectual disability and communication methods.
Main Results:
- Significant patterns of missing privacy assessment data were identified.
- The level of intellectual disability and the use of nonverbal communication were found to predict missing data.
- Individuals with greater support needs were disproportionately represented in the missing data.
Conclusions:
- Incomplete privacy data collection poses a significant barrier to understanding and ensuring the rights of individuals with IDD.
- The findings underscore the urgent need for developing more accessible and inclusive methods for collecting personal outcome data, especially for vulnerable populations.
- Addressing data gaps is critical for promoting the community integration and self-determination of people with IDD.
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