Health Justice for People with Intellectual Disabilities

Photo Credit: Tom Golisano

Commitment to Action

Health Justice for People with Intellectual Disabilities

Commitment by

Tom Golisano

In 2012, Tom Golisano committed to fund 12 Special Olympics International Healthy Communities Demonstration Projects worldwide. Through this $12 million contribution, Special Olympics International (SOI) will identify communities where they will deliver a sustained set of health interventions and supports for individuals with intellectual disabilities. This commitment will enable SOI to expand health services offered through its Healthy Athletes Program beyond the traditional event-based model to a more comprehensive, community-based year-round model. In addition to providing direct health services to more than 300,000 individuals and training more than 5,000 health professionals, this commitment will enable SOI to expand its data collection and ability to document the global health status of people with intellectual disabilities, raise awareness, and generate collaborative solutions to the issue of health disparities facing people with intellectual disabilities.

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Overview

Summary

Commitment

Health Justice for People with Intellectual Disabilities

Launched

2012

Est. Duration

3 Years

Estimated Total Value

$28,700,000

Region

Africa, Asia, Latin America & Caribbean, Europe

Countries

MALAWI, MALAYSIA, MEXICO, PERU, ROMANIA, SOUTH AFRICA, THAILAND, United States

Commitment by

Tom Golisano

Partner(s) of the Commitment Maker(s)

Safilo Group, Catholic Relief Services, Special Olympics, Together For Girls, Lions Clubs International Foundation, Health One Global, UNICEF, University Of Kwazulu-Natal, International Federation of Red Cross And Red Crescent Society, Centers for Disease Control and Prevention, Essilor Vision Foundation

Details

APPROACH:
Through Healthy Athletes, SOI will implement Healthy Communities Demonstration Projects (Healthy Communities) in 12 locations worldwide. These Healthy Communities will receive targeted multi-year funding to extend existing health programs from the current event based model to a year round model. These Healthy Communities will do the following:
- Provide more health care services and education to people with ID through new partnerships. A diverse set of regional, national and local organizations (NGOs, national ministries, universities, health care /promotion providers, etc.) will be engaged in order to provide targeted services that reach people with ID, both at SOI clinics and more broadly in the community. A particular focus will be on leveraging the worldwide access that SOI has to people with ID, to provide partner health organizations (including those focused on diseases of extreme poverty) increased access to this particularly difficult to reach population.
- Integrate health throughout all SOI's global, grassroots programming. SOI conducts 50,000 community-based competitions worldwide annually, each supported by a network of caregivers, coaches, families, volunteers, and athletes. Through Healthy Communities, these events and participants will be harnessed to deliver improved, year-round health messaging, services, and activities to people with ID.
- Leverage technology and bioinformatics to improve health outcomes for people with ID. SOI already possesses the world's largest data set on health status of people with ID. Through this initiative, SOI will have an enhanced ability to collect and use that data, along with mHealth technologies, to both provide caregivers, coaches, and athletes with the information necessary to improve health and well-being.
- Build awareness that drives action. Through this initiative, SOI will be able to incubate, share, and replicate innovative approaches to build additional Healthy Communities across its network of programs in 170 countries worldwide. Additionally, SOI will use its enhanced data to document, analyze, and publicize the health disparities that people with intellectual disabilities, raising awareness to promote the rights of people with ID as a formal priority in the global development forum.
ACTION PLAN:
Healthy Communities will be officially launched at the CGI Meeting in September 2012 and projects will be implemented immediately after. In January of 2013, at the World Winter Games in Peyongchang, South Korea, Special Olympics will to host a global development forum focused on ending the cycle of poverty and exclusion for people with intellectual disabilities in the developing world. This event will bring together, for the first time, world leaders from government, medicine, industry, academe, civil society, and sports, together with persons with intellectual disabilities and their families, to stress the urgency of taking steps to integrate disability into ensuing global health and development strategies.
This commitment will allow SOI to:
- Hold an additional 1,580 additional medical clinics globally over the next four years, staffed by approximately 18,960 health professionals (including 4,800 newly trained professionals) that will provide health screenings, care, education, and other services for an additional 260,000 athletes.
- Train 735 new worldwide local medical professionals to lead clinics in their communities (including specific focus on delivering infectious disease programming via community-based partnerships) and 75 additional regional medical advisors to train and oversee medical clinics within their regions.
- Award 60 mini-grants to replicate and expand the work of the Healthy Community demonstration projects.
- Develop a fitness and nutrition monitoring app that allows athletes to track physical activity and dietary intake against personalized goals and that utilizes social media to enhance achievement against goals to improve health outcomes.
- Create 96,000 athlete electronic health records via direct digital data entry at clinics, allowing for 1) post-event SMS/text queries about follow-up care, use of received devices (e.g. prescription eyewear, hearing aids, etc.), 2) follow-up care reminders and resources, and 3) critical longitudinal data collection for evaluation, research, advocacy and policy change.
- Provide resources (supplies, equipment, shipping, storage) to support additional events, including new programming around infectious diseases.
- Develop online systems for grant applications and reporting that streamline these processes for SOI programs and support the collection of data.
- Enhance quality assurance and monitoring of events through site visits and audits and add additional staff to assist with health information systems, recruitment and training of healthcare practitioners, and implementation of infectious disease programming and partnerships.
- Generate incremental health funding and services to support the long-term, sustainable growth and success of Special Olympics health initiatives.
The Healthy Communities initiative presents the opportunity to achieve remarkable health outcomes for people with ID, both individually and collectively as a neglected population. Hundreds of thousands of athletes will receive direct care at Special Olympics competitions. Thousands more healthcare practitioners, organizations and systems will be engaged in treatment of people with intellectual disabilities, both at our clinics and in their communities - resulting in literally millions more people receiving attention and care outside of the Special Olympics movement.

Background

Throughout the world, people with intellectual disabilities (ID) are literally a forgotten population when it comes to access to and quality of healthcare they receive. Globally, nearly 200,000,000 people with ID face a highly elevated risk for isolation, stigma, physical abuse, poverty, and lack of access to services and information - all compounding to create gross disparities in terms of their health status and basic protections. Simply put, in countries around the world, people with ID are consistently the most marginalized population subset - a status that comes with horrific health outcomes.
The Special Olympics Healthy Athletes program (Healthy Athletes) promotes the overall well-being of people with ID via a global grassroots network of programs in 170 countries worldwide, offering free health screenings at Special Olympics competitions and promoting ongoing access to quality, community-based healthcare services. Special Olympics International (SOI) runs the largest public health program in the world for people with ID, and has conducted over 1.2 million screenings in seven different healthcare disciplines, while training and activating more than 100,000 healthcare practitioners to provide care to people with ID both at SOI clinics and in their own practices. Through this work, SOI has amassed the world's largest data set documenting the health disparities facing people with ID globally.
As Healthy Athletes approaches its 15th anniversary, it is recognized as a proven, cost-effective program that has been implemented at events throughout the world. Healthy Athletes has served as a tool not only for improving athlete health and well-being, but also for educating professionals and collecting data that call attention to the health needs of the ID population and the important role of Special Olympics International in addressing those needs.

Partnership Opportunities

SOI is seeking partners to join together in an effort to meet the health needs of the people with intellectual disabilities. SOI seeks national governments, advocacy organizations, local implementation partners, national governments, UN agencies and other multilateral agencies, bilateral agencies, individual philanthropists, corporations and philanthropic foundations for their support. SOI is seeking match funding of $12MM, and incremental VIK health services and supplies in the amount of $24MM over the next 4 years to support this initiative.

Progress Reports

May 2013
Since the launch of this commitment, all selected Healthy Communities (HCs) attended a planning workshop focused on the development of goals, objectives, activities, outputs, and outcomes. All HC project plans and budgets have now been submitted, reviewed by a team of technical experts and approved. SOI and other partners are providing a range of technical expertise, tools, and templates, fostering collaboration among the HCs and with external partners. HCs are at various stages of implementation in creating partnerships for care and health advocates (families, coaches, peers) for SO athletes.
Health promotion and training resources needed to fulfill HC objectives have been identified and distributed. Additional training resources are being developed or modified by technical experts (malaria, HIV, diabetes, obesity). Four monthly webinars and regular teleconferences have been held with HC's to discuss successes, challenges and best practices. A sharepoint site was also developed for HCs to host web discussions and share training resources, stories and innovative practices.
A SOI toolkit on creating follow-up care partnerships has been drafted and will be finalized and ready for dissemination to all SO Programs. HCs have already identified potential health partners and have begun establishing contact. For instance, NJ has secured support from Riverwinds Community Center, Can Do Fitness, and others for a fitness and weight loss program. Kansas has identified and begun discussions with Salina Health Department; Kansas State University Extension, Salina Parks and Recreation, YMCA, and the Salina Regional Health Center. Wisconsin has had discussions with DHS and the UW Extension Program in Madison. Malaysia has spoken with the University Malaysia Sabah, Welfare Department and Lions Club.
Several HC have already started implementing their objectives including training athlete health leaders, holding Family Health Forums and training coaches on health topics. Live health data entry during athlete screenings has also been piloted. Furthermore, to date 365,715 athletes have unique health profile created in association with the SOI health database.
SOI successfully hosted a global development forum focused on the needs and abilities of people with intellectual disabilities living in the developing world. In doing so, SOI brought world leaders from government, medicine, industry, academe, civil society, and sports together with persons with intellectual disabilities and their families, to stress the urgency of taking steps to integrate disability into ensuing global health and development strategies.