Recruiting the Voices of Persons With Intellectual and Developmental Disabilities in Policy Development: Priorities...

Area of Science:

• Health equity research
• Disability studies
• Public health policy

Background:

• Federal agencies collect data on individuals with intellectual and developmental disabilities (IDD).
• Current data collection may not fully capture the priorities or needs of adults with IDD.
• Understanding participant perspectives is crucial for effective health equity initiatives.

Purpose of the Study:

• To identify the priorities of adults with IDD regarding health equity data, surveys, and information dissemination.
• To understand concerns related to privacy, data content, and communication methods.
• To inform U.S. federal agencies on best practices for engaging this population.

Main Methods:

• Focus groups were conducted with adults with intellectual and developmental disabilities (IDD).
• Qualitative data were collected on priorities for health equity data, surveys, and information dissemination.
• Participant feedback was analyzed to identify key themes and recommendations.

Main Results:

• Participants expressed significant privacy concerns regarding information sharing.
• There is a need for comprehensive data including functional limitations, health risks, and healthcare priorities.
• Clear language, visual aids, and neutral supports are essential for surveys and information.
• Concerns were raised about proxy reporting by parents or support persons.

Conclusions:

• Health equity data for adults with IDD must prioritize privacy, access to quality care, and self-determination.
• Information dissemination strategies should be accessible, clear, and inclusive.
• Federal agencies should incorporate the perspectives of adults with IDD in data collection and communication efforts.
• Addressing social determinants of quality of life is vital for health equity.