Imagine living 20 years less than your peers, not because of your disability, but because health systems fail to recognize your needs. This is the daily reality for millions of people with intellectual and developmental disabilities (IDD). People with IDD die from preventable causes at roughly six times the rate of the general population and nearly 16-20 years sooner. They also face far higher risks of mortality from conditions like COVID-19, cancer and heart disease. These outcomes are not inevitable; they result from systemic neglect and exclusion.
For too long, the needs of people with IDD have been invisible in health policies, undercounted in data and sidelined in decision-making. Their experiences are shaped by stigma, inaccessible services and neglect. The Special Olympics Global Health Report – Focusing on the Invisible offers evidence from a System-Level Assessment conducted across 11 sites worldwide, exposing the gaps and barriers people with IDD face throughout their lives when seeking health services. An Easy Read executive summary of the report is also available here, making the findings more accessible to people with IDD and their families
The report also showcases lived experiences. Michele, a person with IDD living in the state of Washington, USA, was diagnosed with type 2 diabetes and recalls: “The doctor didn’t ask how I prefer to communicate… He didn’t use any visual aids or check if I understood. I left feeling overwhelmed and worried about making mistakes.”
In Pakistan, Talha grew up with vision problems, a common diagnosis for people with IDD. After visiting multiple ophthalmologists, none could determine his prescription because Talha could not read letters on standard eye charts. At last, a specialized facility partnering with Special Olympics Pakistan identified his prescription in minutes using a symbol-based LEA chart instead.
These stories highlight a critical truth: the barriers people with IDD face are not about their abilities but about health systems that remain unprepared and unwilling to adapt. Systemic change is needed to make the invisible visible. The global movement for health equity shows us what is possible if governments, civil society and advocates act with urgency and vision.
Health Equity as a Justice Issue
Health equity means ensuring that everyone can attain their full potential for health and well-being, regardless of disability, gender, income or geography. Yet for people with IDD, health equity remains out of reach. The global report underscores that inequities are driven by:
- Policy gaps: Most health laws and strategies ignore the specific needs of people with IDDs, even in countries that have ratified the UN Convention on the Rights of Persons with Disabilities. Assessment findings revealed that almost no country had specific IDD indicators or policies.
- Structural barriers: Health information and facilities are often inaccessible. Even disability-related subsidies and transport systems rarely account for the needs of people with IDD. They are also frequently excluded from decisions about their own care.
- Training gaps and provider bias: Many health workers enter the workforce without training to support people with IDD. This leads to misdiagnoses, communication barriers, dismissiveness, or outright denial of care. Only 52% of people with IDD surveyed said they always understood their healthcare provider.
- Lack of data: Standard tools like the Washington Group Short Set on Functioning (WG-SS)often fail to identify people with IDD. As a result, this population is undercounted in statistics. Further, people with IDD are largely absent from health research.
This is not only about poorly designed health systems; it is a matter of justice. Excluding people with IDD perpetuates inequity and undermines global commitments to Universal Health Coverage (UHC) and the Sustainable Development Goals (SDGs). No country can claim to deliver “health for all” while leaving millions of its citizens behind.
Pathway for Inclusive Health Systems: A Call to Action
How do we move from invisibility to inclusion? The report outlines a theory of change that shifts from a medical model, where disability is treated as an individual problem, to a social and rights-based model, where health inequities are viewed as failures of systems around us, rather than individuals. The pathway to inclusion requires:
- Governance and Representation: Governments must ensure meaningful participation of people with IDD in policymaking.
- Person-Centered Care: Health systems must provide supported decision-making, Easy Read materials, patient navigators, and longer consultation times.
- A Skilled Workforce: Disability inclusion training must be mandatory across health professions, with people with IDD involved in designing and delivering these trainings.
- Data and Inclusive Research: Disaggregated, accessible data is essential for accountability. People with IDD must shape research so findings reflect their priorities.
These recommendations are backed by lived experiences of people with IDD and global best practices. In Oman, faculty across health disciplines are being trained in IDD-inclusive care. In Washington State, USA, the “Nothing About Us Without Us Act” mandates the representation of people with IDD in every task force. These examples prove change is both possible and effective.
As David Duncan, Chair of the Special Olympics Global Athlete Leadership Council and Special Olympics Athlete from Jamaica, writes: “Give us a seat at the table. Give us a say and the supports we need to use our voices, claim our health and live our best lives. We are not asking for special treatment. We are asking for a level playing field.”
Health equity for people with IDD is not charity. It is about honouring the right to health, enshrined in international law, and ensuring that the vision of UHC and the SDGs is truly universal. For policymakers, advocates, and allies, the time to act is now. By working together, we can make sure people with IDD are visible, empowered, supported and included in all parts of society, beginning with their health.
GHAI serves as Special Olympics International’s global strategic advocacy partner to help global and country-level teams assess the level of intellectual disability-inclusion of national health systems and develop advocacy plans for improving health access and outcomes.