People with intellectual and developmental disabilities (IDD) face some of the world’s most entrenched health inequities. They experience higher rates of preventable health conditions, delayed or missed diagnoses and shorter life expectancy—not because of their disabilities, but because health systems are not designed to include them. Changing this reality means that evidence-based advocacy is required in addition to just acknowledging the problem.
Rosemary Collaboratory, launched by Special Olympics International (SOI) and made possible by the Golisano Foundation and the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services, was created to do exactly this: to generate data on inclusion of people with IDD in health systems and translate the data into concrete policy action. But building an advocacy effort across 10 sites, each with different health systems, political contexts and capacities, requires technical expertise in policy change.
That’s where the Global Health Advocacy Incubator (GHAI) came in. GHAI has spent a decade cultivating powerful, locally-led advocacy movements across the world. Partnering with SOI offered the opportunity to bring this model into a new domain: advocacy for IDD-inclusive health systems, a field where policy change is urgently needed yet has not been sufficiently prioritized.
Key Milestones: Translating Evidence into Advocacy
From 2023 through 2025, GHAI served as SOI’s global strategic advocacy partner, working with global and national teams through different phases of Rosemary Collaboratory, from assessing health systems to defining advocacy priorities, launching national and global reports and implementing advocacy plans. These efforts aligned with its goal to accelerate country-level research, policy and practice for health equity for persons with IDD through a global movement.
Phase I: Building Evidence for Advocacy
A core principle of GHAI’s approach is evidence-based advocacy, ensuring that policy objectives are grounded in real, documented gaps. GHAI advised SOI teams as they completed Systems-Level Assessments (SLAs) across 11 sites. These assessments, based on SOI and Missing Billion Initiative’s SLA IDD module, mapped gaps in governance, health financing, data systems, human resources for health, and accessibility of health facilities and information. GHAI provided advice on the project structure and adapting the SLA framework; supported formation of country teams and orientation; and conducted advocacy capacity mappings to identify strengths and gaps and organized advocacy trainings.
By the end of Phase I, each site completed its assessment and began shaping evidence-informed advocacy plans, shifting from data alone to data for policy change.
Phase II: Defining and Prioritizing Policy Objectives
If Phase I was about gathering evidence, Phase II was about transforming that evidence into strategic, actionable policy objectives.
GHAI worked closely with SOI and country teams to finalize clear, feasible policy goals; map decision-makers and influential partners; guide the early implementation of advocacy plans and strengthen communications to support policy change. For most Special Olympics country Programs, this was the first time they developed a policy-focused advocacy plan grounded in national evidence.
This phase also focused on the publication of a global report, along with country- and state-level reports, drawing on evidence generated through SLAs, a review of existing literature, lived experiences and expert insights. The work was anchored in global priorities highlighted by the WHO, as well as international disability rights frameworks. GHAI played a key role in the development and launch of the global report, Focusing on the Invisible, which highlights the persistent gaps and systemic barriers faced by people with IDD across the life course in accessing health services. The report also articulates global calls to action to advance health equity for people with IDD.
The Way Forward for Future Partnerships
This partnership offered powerful lessons for future collaborations where GHAI acts as a technical advisor and global strategic advocacy partner for global organizations and is helping to build advocacy efforts in emerging policy domains.
Evidence Must Lead, But Advocacy Must Shape It
Across nearly all sites, data on people with IDD, especially within health systems, was sparse, fragmented or completely absent. The absence of routine disability-disaggregated data also reflected a larger advocacy problem: governments cannot fix what they cannot measure.
Evidence-generation (such as SLAs) is essential, but advocacy must begin early to guide data priorities, stakeholder engagement, communication framing and national readiness. This highlighted the value of embedding advocacy thinking into research processes from the start.
Clear Policy Prioritization Is Critical
National teams often identified numerous needs. Some sites struggled to decide which policy objective to pursue first, which is an essential step for effective advocacy. GHAI supported teams in translating evidence from across sites into SMART (Specific, Measurable, Achievable, Relevant and Time-bound) objectives, enabling more focused and strategic advocacy efforts. This structured, evidence-driven approach offers a valuable model for future multi-country advocacy collaborations.
Why Long-Term Investment Matters for Advocacy
Advocacy is inherently a long-term endeavor; as such, objectives, outcome expectations and funding models should be supported by long-term timelines. A minimum horizon of three to five years, supported by sustainable financing, is essential to building durable and effective advocacy movements. This approach must also prioritize continuous and adaptive capacity strengthening, recognizing that one-off trainings are insufficient to produce lasting change. Through ongoing mentorship, regular check-ins with consultants and individualized capacity mapping, GHAI supported tailored capacity strengthening and promoted opportunities for peer learning across countries, helping advocacy efforts evolve and respond to changing contexts.
Conclusion: Advancing Inclusive Health Through Advocacy
Rosemary Collaboratory has shown what becomes possible when evidence, lived experience and strategic advocacy come together. Through its partnership with SOI, GHAI helped build the foundation of a global advocacy movement to advance health equity for people with IDD that is rooted in data and lived experiences, strengthened by local leadership and aligned with global policy landscapes.
The lessons from this partnership will guide future efforts to build strategic advocacy capacity, improve health services for marginalized populations and ensure that health systems everywhere become truly inclusive, by design, not by exception.