[Washington, DC, – 17 September 2025] Special Olympics published a global report today sharing findings from Rosemary Collaboratory—a groundbreaking international initiative designed to advance health equity for people with intellectual and developmental disabilities (IDD) across health systems worldwide. People with IDD are often invisible, unseen, and overlooked when it comes to their health needs. During their lifetimes, people with IDD disproportionately experience a variety of health challenges, such as obesity, diabetes, heart and respiratory diseases, and mental health conditions. As a result, they die on average 16 to 20 years earlier than the general population—often from conditions that could be prevented or better managed with timely and equitable access to effective health services.
“The health inequities people with IDD face are not inevitable—they are readily remediable. People with intellectual and developmental disabilities (IDD) have simply not been made a priority,” said Dr. Dimitri Christakis, Chief Health Officer of Special Olympics. “This report shines a light on the structural and systemic barriers that prevent equitable health services for people with IDD. And it also goes a step further by laying out a practical path forward. For more than 50 years, the Special Olympics movement has been committed to achieving inclusion for people with IDD. We invite others to join us in that pursuit.”
During the first half of 2024, Special Olympics, through Rosemary Collaboratory, engaged teams in 11 sites across nine countries including Chinese Taipei, India, Ireland, Morocco, Nigeria, Pakistan, Paraguay, South Africa, and, in the United States, Pennsylvania, Washington, and Wisconsin, to assess the state of inclusion of people with IDD in health systems. Special Olympics collaborated with the Missing Billion Initiative (MBI) to develop a new, IDD-specific module building off MBI’s existing assessment of disability inclusion in health systems, to assess the extent of inclusion of people with IDD in health systems. The assessment tool contains almost 60 indicators to assess gaps, highlight access issues, and identify progress for people with IDD.
The aim of Rosemary Collaboratory is to use the collected data to drive health system improvement related to the care of people with IDD, by targeting barriers that people with IDD have identified and prioritized. The findings underscore urgent challenges that people with IDD face with respect to their health, including limited accessibility of services, provider biases, a lack of training among health professionals, social stigma, discrimination, inadequate data collection, and the absence of targeted policies.
Today, Special Olympics released its findings from Rosemary Collaboratory in a report titled, “Focusing on the Invisible: The Overlooked Needs of People with Intellectual and Developmental Disabilities and Actions to Strengthen Health Systems for Inclusion,” pointing to major gaps in health systems for people with IDD. In addition to the assessments in nine countries, the report also includes data from surveys of over 1,000 people with IDD and health workers in over 50 countries. These data revealed:
- Communications Gaps – Only 52% of people with IDD surveyed said they always understand their health care provider
- Decision Making Limitations – 2 in 3 people with IDD surveyed do not make their own health decisions or only do so sometimes
- Training Needs – Nearly 3 in 4 health workers surveyed thought that professional development on disability health care would be very important to improve health services for people with IDD.
- Data Deficits – 66% of health workers surveyed thought improving data collection on the health of people with IDD would be a very important measure to improve health services for this population
Based on these findings and other data sources, Special Olympics has generated four key recommendations for policy change reflecting feasible steps for governments to take urgent action. These recommendations are centered around:
Governance, Leadership, and Engagement - Include people with IDD in policymaking processes in meaningful ways to ensure that their needs are considered and addressed;
Person-Centered Care - Ensure services accommodate diverse and sometimes invisible needs, particularly related to decision-making and communication;
Health and Care Workforce - Require training that equips health and care workers with the skills to deliver quality care to people with IDD; and
Data for Monitoring and Research - Strengthen the collection and use of health data regarding people with IDD to drive evidence-based action.
Each recommendation includes suggested strategies that, if implemented, would build on the targeted actions from the 2022 World Health Organization Global report on health equity for persons with disabilities. These strategies ensure that health systems strengthening efforts also benefits people with IDD.
The importance of the report and its recommendations is echoed by David Duncan, Chair of the Special Olympics Global Athlete Leadership Council, who also participated in the Editorial Review Group that helped shape and steer this report: “Give people with IDD a seat at the table. Listen to our unique perspectives. We want to be included in what’s going on; we have our own views and challenges that might be a little different. Give us a say and the supports we need to use our voices, claim our health, and live our best lives. Give us a line in the curriculum, the budget, the policy document, the survey…and don’t forget to let us be a part of writing those lines.”
This release highlights important findings from the report. To read the full report, including full methodology, limitations, and context, please visit: https://www.specialolympics.org/focusing-on-the-invisible/