Effective data collection and analysis is essential in addressing the health disparities faced by people with IDD. Robust data helps identify where health systems fall short and holds decision-makers accountable.
Improve Data Disaggregation
- Break down data by disability or impairment type to better understand the health status and needs of people with intellectual and developmental disabilities.
- Use standardized and tailored tools that accurately reflect people with IDD.
Make Data Publicly Available
- Provide open access data on health outcomes and service coverage of people with IDD.
- Create public dashboards or reports in accessible formats so communities and advocates can track progress and identify additional gaps in care.
Involve People with IDD in Research about their Health
- Use participatory data collection methods that directly involve people with IDD and their advocates in the research and evaluation process.
- Invest in research to identify what works in delivering care to people with IDD, so that these practices can be looked to as models, and apply findings to public health strategies to improve health services, policies, and outcomes.
The Independent Monitoring for Quality (IM4Q) program operates across the U.S. state of Pennsylvania to ensure that the voices of people with IDD are heard. IM4Q’s goal is to improve the quality of life and services for individuals with IDD by gathering their direct input and using it to propose policy changes. This ensures that services meet their unique needs and preferences. Rather than focusing only on what agencies think is important, IM4Q ensures that people with IDD have a voice in the conversation. Their input helps shape services to better align with personal goals, like finding a job, living independently, or accessing specialized health care.
The program conducts about 5,000 interviews each year, engaging directly with individuals receiving services, their families, and others who know them well. By including people from diverse living situations, like family homes, small group settings, and larger residential centers, IM4Q captures a broad range of experiences. These insights help identify strengths and areas needing improvement. For example, access to communication devices, voting opportunities, or more personalized employment support are topics that have been touched on during interviews. It also covers health-related topics such as sufficient levels of care, emergency preparedness, quality of medical/dental care, access to care, and ability to communicate health needs. Over time, IM4Q’s findings have guided policy changes and system-wide enhancements, making Pennsylvania’s IDD services more person-centered, responsive, and inclusive.
The information that IM4Q gathers is actively used to drive policy and funding decisions that shape real-world services. For instance, when multiple interviewees and their families highlighted a lack of appropriate communication devices, the Pennsylvania Office of Developmental Programs made it a priority to ensure those supports were more readily available. Similarly, when individuals interviewed indicated they wanted to vote and were not registered, efforts were made to improve civic participation for people with IDD to vote.
Take Action
Improve data disaggregation by disability types to ensure people with IDD are accurately represented in health data systems and publish health data about those with IDD in accessible formats.