When researchers study aging, they typically look at things like disease rates, lab results, and physical function tests. But those data points can often miss important measures for people with intellectual and/or developmental disabilities (IDD).
Our new report asks a different question: what does healthy aging look like for people with IDD, according to the people and communities who know best?
Starting with what matters most
IEC brought together adults with IDD, family members, clinicians, insurers, researchers, and policymakers to define what healthy aging outcomes matter most to them. The answers went beyond disease prevention. People described healthy aging as having energy, being comfortable, staying connected to their communities, making their own choices, and continuing to do the things they love.
This paper takes those community-defined priorities and connects them to a globally recognized aging framework from the World Health Organization (WHO). The result is practical guidance for researchers and clinicians on how to measure aging outcomes in ways that are meaningful, rigorous, and inclusive for people with IDD.
Four key recommendations
The paper outlines four recommendations for researchers and clinicians:
- Centering community priorities from the earliest stages of research design
- Using standard geroscience measures alongside tools adapted for IDD, rather than replacing accepted measures
- Accounting for differences in baseline function and accelerated aging trajectories in IDD populations
- Emphasizing outcomes that reflect social and community participation, autonomy, and quality of life as central indicators of healthy aging
Why this matters
People with IDD have long been excluded from aging research, which means science often does not reflect their experiences or serve their needs. This paper is a step toward changing that. By grounding geroscience in community priorities, researchers and clinicians can work toward a future where healthy aging is defined and measured in ways that work for everyone.