Special Olympics Consortium

• Special Olympics Health Research & Evaluation Team & consultants 
• CDC NCBDDD/DHDD/DHPB personnel 
• Other Federal agency personnel 
• National Center on Health, Physical Activity and Disability (NCHPAD) staff 
• Academic IDD Investigators/Scientific Advisory Board members 
• Special Olympics athletes and family members 
• Special Olympics State Program staff 
• Other Special Olympics International staff 

Total: 40-45 attendees

This stakeholder meeting will serve as an initial step in identifying best practices in the development of an online recruitment tool, tentatively being referred to as a Special Olympics registry, that will be used to support the ongoing evaluation, including longitudinal analysis, of Special Olympics health programming implemented as part of cooperative agreement DD21-2102 with the US Centers for Disease Control and Prevention (CDC).

Persons with intellectual and developmental disabilities (PwIDD) have been underrepresented in health-related research studies, which has contributed to a lack of understanding of the underlying causes of health disparities and poor health outcomes experienced by this population. Special Olympics health programming is increasingly recognized as a key opportunity to improve the health of PwIDD. As such, Special Olympics (SO), as part of cooperative agreement DD21-2102 with the US Centers for Disease Control and Prevention (CDC), is exploring ways to enhance participation of PwIDD in SO health programming and facilitate the use of SO data to better support ongoing program evaluation efforts, including opportunities for longitudinal evaluation.

Building on two decades of collaboration with the CDC’s National Center on Birth Defects and Developmental Disabilities, Special Olympics is expanding, modernizing through technology, and standardizing its Healthy Athletes® and Healthy Communities programs nationally through evidence-based interventions.

Special Olympics is conducting this work by focusing on three strategies and four activities. Strategies include:

1. Health screening and referral to appropriate care, to increase person-centered linkages to health services, including oral and mental health care, vaccinations, health check-ups, women’s health and improved management of health conditions including diabetes, obesity, heart disease, hypertension, depression, and anxiety;
2. Health Promotion Programs to increase knowledge of personal risk factors and adoption of healthy lifestyle behaviors, increase control of chronic conditions, and improve life satisfaction and social-emotional support; and
3. Building Capacity among health professionals, students, and organizations so that they can deliver high quality inclusive health care, health programs and services to people with IDD.

Activities include:

1. Prevention of chronic conditions through engaging, evidence-based health programming leading to reduction in personal risk factors;
2. Assessment of health through technologically advanced screenings and care coordination leading to improved early detection and management of health conditions;
3. Training of the healthcare workforce through competency-based interprofessional educational curriculum and hands-on experiences with Special Olympics athletes as co-educators leading to improvements in competent compassionate care;
4. Health systems change through partnerships, co-education and data sharing leading to inclusion of people with IDD in policies and practices of mainstream health organizations.

This work is strengthened through partnerships with the National Center on Health, Physical Activity and Disability (NCHPAD) and local, state, and territorial health agencies, as well as other national and local partners in the community.

Enhanced data collection systems and ongoing data analysis will result in continuous quality improvement of programming and the creation of compelling evidence that can be used to communicate the impact of SO programming on the health and well-being of PwIDD. Notably, there is a clear opportunity to implement longitudinal evaluation of SO health promotion programs and, as such, the establishment of a Special Olympics registry can further enhance the ability to evaluate the long-term impact, and broaden the reach, of Special Olympics programming to improve the lives of PwIDD.

The Consortium will seek contributions from key stakeholders, including Special Olympics athletes, Program staff, researchers, Federal agencies, and others, to garner feedback on the function and feasibility of a Special Olympics Registry in evaluating, improving, and enhancing the reach of Special Olympics programs.

The expected outcome of this Consortium meeting is to hear about best practices, lessons learned, and recommendations from key partners on how to develop and implement a registry that will be used to conduct longitudinal evaluations of SO Programs implemented under Cooperative Agreement DD21-2102. Contributions from these discussions may be used to identify opportunities and next steps in the creation of a Special Olympics Registry to support the longitudinal evaluation of SO programming.