Special Olympics Healthy Communities

Dr. Alicia Bazzano has dedicated her career to improving the health of people with intellectual and developmental disabilities (IDD) and currently serves as Chief Health Officer of Special Olympics, leading global efforts to end health disparities for people with IDD in the Healthy Communities Project through inclusion. She is an expert in treating patients with IDD with on-the-ground global health program experience. She has served on faculty of UCLA’s medical school for almost 20 years and spent a decade leading health for the Los Angeles agency for IDD. She was the founding Chief Medical Officer of an inclusive, multi-disciplinary health center. Dr Bazzano completed medical school and pediatric residency at UCLA. She completed a Master’s in Public Health and Ph.D. in the UCLA Department of Health Policy and Management. She is a well-published researcher, with interests including quality, global health systems, transition from pediatrics to adulthood, mental health and wellness/lifestyle.

People with intellectual disabilities (IDD), like Down syndrome and autism, are the most marginalized, invisible population whose lives are cut short by 16 years due to preventable causes like constipation, dehydration, and pneumonia. They are isolated, stigmatized and abandoned. Special Olympics is creating a world where people with IDD have every opportunity to be healthy and reach their potential. Our Healthy Communities Project involves 68 countries and 43 US states conducting health, fitness and wellness programs for 95,000 people to prevent deadly health conditions; providing over 2 million last-mile health screenings and care to address conditions early; training 280,000 of the next generation health workforce; and advocating alongside people with IDD for systems change. My goal is to expand our network across 193 countries to create a health revolution. I won’t rest until people with IDD are included because improving health for the most vulnerable means we all are included.

About 3% of the global population, or over 200 million people have intellectual disabilities. Getting this diagnosis in many cultures is considered a curse and parents of children almost universally hear that their child will never amount to anything. These children are often neglected or abused, and 90% don’t go to school. They experience 3-6 times the number of preventable health conditions. Our 2018-19 data from 208,240 screenings from 74 countries show that 22% never had an eye exam, another 32% need new glasses prescriptions, 35% have untreated cavities, 33% of youth and 63% of adults have obesity, 60% have hypertension, and 21% failed hearing testing.  At our 2019 World Games, 59% of athletes had the wrong shoe size. Worse yet, during COVID, people with IDD are being left behind in prevention, testing, and treatment and are dying 2-5 times more often than those without ID, in younger age groups. The inability of people with IDD to survive and thrive globally is not due to disability, but the inability to ensure access and benefit from quality healthcare. Few health professionals (<20%) are trained to treat people with intellectual disabilities and systems are not effectively adapted to include people with IDD.

The Healthy Communities Project improves the health of people with intellectual disabilities (IDD) by providing them with:

• ongoing health promotion and disease prevention --increasing physical activity, fitness and wellness while providing targeted health education and behavior change interventions to people with IDD and their families. This work is proven to reduce risk factors for premature death, including hypertension, and improve health behaviors.
• free head-to-toe health screenings-- tailored, sensitive to their needs and addressing the most important preventable conditions. These screenings are coupled with referral networks that resolve urgent and specialty health issues--from hearing loss to HIV, eye disease, dental infections, pneumonia, malaria and more.

Further, we seek permanent, inclusive health change through:

• training the health workforce--including health professionals, students, and community health workers to increase compassion and appropriately care for people with IDD.
• Advocating for access to quality health care-- by convening partners, arming with our data and empowering people with IDD and their families through leadership training to speak up for inclusion within their local and the global health context.

Countries and US states participating in the project strive to reach criteria in these four areas to receive ongoing Healthy Communities designation.

The only way to end exclusion is to have people who face these challenges daily help create the solution. People with IDD have conditions and syndromes characterized by intellectual differences and accompanying learning, social or physical limitations. This group—who were previously thought of as “mentally retarded”--are now co-creating the solutions that guide Healthy Communities. Since 2016, nearly 4000 people with IDD have been trained and activated as leaders in Healthy Communities, including meaningfully working in every country office. They are leading their teams, families, friends and communities to create programming and pursue healthy lifestyles, encouraging peers to seek out health screenings, co-teaching health professional students how to care for them, and advocating for healthcare providers and governments to define and adopt inclusive policies. To further understand the need, we have amassed the largest dataset on health of people with ID globally including >400,000 records for programmatic improvement and advocacy, defining the most prevalent health conditions and primary access barriers that people with IDD face. This year, after receiving the healthcare they needed, our data show that 51% of people with ID no longer require urgent referrals, 61% no longer have hypertension and 67% no longer have mouth pain.

People with intellectual disabilities (IDD) are an extremely marginalized population, often overlooked by those focused on addressing inclusion through improving physical access alone.  By addressing barriers to quality health care faced by people with IDD, the Healthy Communities project is creating programming, professionals and health systems that are inclusive of everyone. By standing side-by-side and advocating loudly--those with and without IDD—we are building awareness of health disparities and their solutions. By showing the world that people with IDD are athletes, leaders and change agents, we are changing attitudes, decreasing stigma and creating the inclusion revolution.

Special Olympics has been working to improve the health outcomes for people with ID for two decades, initially through sports and athletic opportunities and more recently through a broader holistic approach that addresses mental health, social and emotional well-being, and more. Through this work we’ve recognized that athletes (with or without ID) cannot be their personal best unless their core health needs are addressed, and we're working overtime to level the playing field and make the global health system more inclusive.

From my personal perspective, I too have been working my entire career to improve health outcomes for people with ID, working tirelessly within my clinic to draw attention to the gross disparities people with disabilities face every single day. Within my first year as a C-level member of the Special Olympics leadership team, it’s become my mission to take the incredible work this organization began over 50 years ago and re-focus it for the future. This is a very complex issue with a complex solution, but building on my personal professional experiences and drawing from the wealth of knowledge within the Special Olympics movement already, my team and I are motivated to elevate this urgent issue at global scale.

Among the attendees at a 2019 Healthy Communities Nigeria screening was Mrs. Raji, the mother of Tosin Raji, a 19-year-old with ID. Mrs. Raji described: “My son was not born blind but when he grew older, he started having problems with his sight. I thought the symptoms were due to his disability, but … the [Healthy Communities] optometrist that said that it may be a case of post-traumatic cataract and he wants to … recommend him for surgery.” The Raji family story is repeated thousands of times across the world in Healthy Communities which are adding years of life for people with IDD, enabling significant healthcare savings, equipping the health workforce to better serve all people, saving sight and saving lives.

Much of my life has been leading up to the Healthy Communities project, but I could only see in retrospect. Who knew that a temporary contract position while my husband completed fellowship would result in lifelong passion for working with people with ID? Hearing stories of systems letting families down, getting angry and trying to change within governmental organizations ignited my dissatisfaction with the status-quo. I gained skills in navigating stakeholder expectations, leading during emergencies, like the H1N1 epidemic, and scaling back while retaining essential services during financial downturns. I developed new revenue sources, leading projects on healthy lifestyle, disaster preparedness, mental health, quality measurement, provider training and more, chipping away at health inequity. From there, developing an inclusive clinic seemed not a huge step, though I had everything to learn—equipment supply, federal regulations, billing systems, non-profit board management and fundraising. That eventually led to national and international work on health systems change, and to Special Olympics.

I wouldn’t have predicted that my health policy and management skills would be used at a global sports organization, instead of a remote hospital. I wouldn’t have thought that I’d use my research skills advocating with governments and donors. Who would have predicted that COVID would have radically increased the need for prevention and last-mile care for people with ID to prevent deaths--not in the future, but today? But now, I can see how every experience led me to now and the absolute certainty that this is where I will deliver.

Moving to online health screenings has given me a few gray hairs but a lot of wisdom. I made the classic mistake of pushing too far too fast and not looking back to ensure your army is there. After two decades of in-person screenings, moving to online was met with fear and resistance.

On March 7, I got the call that after a Special Olympics basketball event with 500 people, someone had tested positive for COVID. That call began testing four of my key leadership skills: listening, persuasion, communication, and consensus-building.

Because of my H1N1 experience years before, I knew what humanitarian emergencies looked like for people with IDD and tuned in to the CDC early in the pandemic. I recognized that we would need a momentous response to prevent horrible outcomes. I persuaded my colleagues around the globe of the importance of shutting down in-person operations, and the need for consistent, forceful, compassionate messaging. I changed our platform to better aid our population and contacted organizations to ensure they were not forgotten. Under my leadership, within 2 days, we had online teaching about handwashing and masking. Within 2 weeks, we had an online multi-level fitness and coping curriculum. Within 1 month, we had a toolkit for advocating against discrimination, including treatment denial and allowing support persons in hospitals. After 3 months, people with ID could have support persons in hospitals, the CDC began tracking COVID in people with ID and 90% of people with IDD and families surveyed had utilized our materials/programming.

In 1968, Special Olympics was founded on a radical, innovative idea: people with intellectual disabilities are capable of greatness, worthy of being celebrated, and deserving of opportunities.  We’ve made progress in 52 years, and our Healthy Communities exemplify what we can do.

Special Olympics Healthy Communities is the first and only global project that seeks health care inclusion for people with IDD. Never before has sport and fitness been a primary means of improving health for people with IDD; never before have people with IDD been empowered to improve their own health and lead advocacy efforts to change health systems; never before has training on IDD been a measure of competence for health professionals; never before has delivering high quality health care meant treating people with IDD well and as equal to people without IDD; never before has a primary measure of health systems equity been how those systems care for and drive improved health outcomes of people with IDD. Ultimately, never has inclusion been measured by how it benefits the target population—for us, this measure of inclusion means that people with IDD are benefiting from opportunities that will improve their health outcomes and eliminate the mortality gap. The means to achieve that inclusion is to change hearts, minds (and bodies) through sport and fitness, health and wellness, play and competition, education and advocacy, belonging and hope. That is how Healthy Communities truly does create a new dimension of performance and that is how Special Olympics continues to innovate.

Last year, 95,012 people with intellectual disabilities participated in ongoing prevention and fitness programs and we provided 124,333 free health screenings. We trained 36,258 health professionals and students, and 8,372 people with IDD and families advocated for change.

In one year, we expect to expand direct disease prevention and health promotion interventions to 100,000 people with IDD and conduct 75,000 health screenings, including piloting virtual screenings. In 5 years, we expect to provide prevention programming to 250,000 people. Since Special Olympics health work started 20 years ago, we have provided over 2 million health screenings and in the next 5 years, through expansion and telehealth, want to reach another 1 million. Our stretch goal is to have provided 5 million screenings by 2030.

In one year, we expect to train 25,000 professionals and students and to change curriculum in 10% of US medical schools to include intellectual disabilities. In 5 years, we want to expand to 10% of health professional schools globally--over 290 schools, training 50,000 professionals and students annually. In each of those schools, an athlete or family health advocate will teach alongside other professionals.

 We currently have a footprint of health activities in 135 countries, with active and sustained programming in 68. In 5 years, we hope to double this sustained reach to 150 countries. In 10 years, we want inclusive health work in all 193 Special Olympics countries and territories and  to be positioned as the leading health authority for people with intellectual disabilities. 

Our goal over the next 5 years is to emerge as the global authority on the health and inclusion of people with ID in a rapidly evolving world – demonstrating that effective programming can erode the premature mortality experienced by people with ID.

Since people with ID currently die 16 years earlier than the general population, we have an ambitious goal of expanding programming to ensure that 250,000 people have this disparity reduced to less than 10 years, in just 5 years!

To achieve this our focus for the next year is to concurrently test innovations, specifically through the use of technology, whilst expanding the reach and quality of local and at-home activities. This technology includes trackers that incentivize and monitor improvements in physical activity and other healthy behaviors; utilizing technology that allows health screenings and education to take place remotely with unlimited reach; and using online learning platforms to reach professionals and students virtually. All of these modalities will enhance the quality and evaluation of our interventions, positioning us to effectively demonstrate how our intervention is adding years of life on to those with ID.

By being cutting edge in our programming and reaching the most marginalized population, we feel that the project sets us apart and positions us to demonstrate an effective means of reaching and improving the lives to ALL marginalized populations - not only those with intellectual disabilities.  

This year, COVID-driven massive shifts require different capacities as we move from in-person fitness and prevention to online; in-person screening encounters to telehealth; hands-on training of health professionals to virtual; and local advocacy to global connectivity. Furthermore, low technology usage among people with IDD especially in developing nations may restrict initiatives that require access to technology or significant training. Thus, our largest barrier is the need for technical knowledge on telehealth, legal counsel especially regarding privacy, and financial resources toward transformation to simultaneous online and at home health interventions at scale.

Over the next 5 years, firstly, providing sufficient scale without inhibiting quality over 190 countries presents significant financial challenges. Our model is built on a small headquarters team and a large cadre of volunteers, consisting largely of community and event organizers, public health, health and fitness providers, academics, families and advocates. Increasing capacity within that model to understand and develop sustainable funding streams remains the greatest barrier to achieving our goals.

Secondly, across project countries, differences exist in language, cultural and health beliefs, disease burden, and health systems. This impacts materials, interventions and resources, which must be tailored to address differences. The further challenge herein is marketing a project that may address different health disparities through different means in different locales.

Lastly, specific to training health care professionals and students, there are no globally accepted training curricula across training institutions and professional associations. As a result, it maybe be difficult to adopt a uniform curriculum for training students.

CHANGE TO INCLUDE partners like CDC and Golisano that are all-around partners, including thought partners and financial supporters as separate from partners that just provide funding and those that are inclusive health partners or grantees and those who are participating in projects with us.

Through the project, we partner with a number of organizations at a global, national and local levels who provide different levels of support. We are fortunate to have major partners in the Golisano Foundation and US CDC who underwrite our health programming internationally and in the US respectively. Additional partners include organizations such as UN agencies (UNICEF, UNFPA), international NGOs such as International Federation of the Red Cross, Catholic Relief Services, Save the Children, and foundations such as Lions Clubs International, governmental partners and corporate partners such as Essilor and Safilo. All of these partners provide support in different ways including financial, technical support, value-in-kind services, resources, and volunteers. In addition, the project has an intentional extensive partnership network in each country that extends to government partners (often Ministries of Health), university/academic partners (including 87 universities currently) and partnership with healthcare providers, hospitals and insurance plans. These partners provide support in terms of access to care, access to trainees and volunteers, research, advocacy and political support, all of which is critical as the project looks to transform health systems at multiple levels. 

Our business model is built on the premise of realizing a significant return on investment – both financially and in improved health outcomes. Each aspect addresses barriers to receiving quality health care, including the overarching barrier of financial inaccessibility.

The year–round fitness and disease prevention programming is delivered through a cadre of volunteers who provide ongoing physical activity and wellness initiatives. These activities cost $19/participant and have proven to be effective in reducing blood pressure sufficiently to reduce the need for medication, a cost-saving per individual with ID of $3,450/year (in prescriptions and hospital admissions) and an average gain of 2 years of life.

The health screening programming is also executed through a large, trained contingent of clinical and non-clinical volunteers, greatly reducing the cost for all 8 screenings to just $98. In comparison, just a single fluoride treatment typically costs $88, bone density testing costs $125, and hearing testing is $250. This investment is further returned multifold through the provision of direct services, such as free prescription glasses and hearing aids (valued at $1000-5000 each) as well as through preventive efforts. Our ability to improve balance, for example, results in $7,300 in savings/participant/year through avoiding fall-related traumas.

Similarly, our training of health professionals, costing $23/trainee, greatly improves knowledge and skills, in turn improving quality of care. Conservative figures indicate savings of $231/year per person with IDD are achieved through accurate diagnoses, reduced need for repeat visits and lower hospital admissions.

The key to the financial stability of our project is in developing relationships with government ministries, local non-profits and NGOs to support the sustainability of health programming in each country where we operate. Special Olympics has many examples of successful sustainability models where countries receive financial and resource-based support from multiple government ministries such as the education, health/family welfare, social justice, youth affairs and sport. Engaging a variety of key leaders allows our programs to permeate the general operations of a local government and enact systematic and widespread change towards people with ID. At the local level, our focus lies in building infrastructure to ensure health programs are initiated and that our broader health activities are well-established for the long-term.

In addition to our integration within local contexts Special Olympics also maintains financial sustainability through donations, grants and partnerships, both from global sources with support (i.e. corporate sponsorships) to grassroots fundraising within a community driven by local donors. We currently rely on the generosity of donors to fund most of the vital activities that Special Olympics implements worldwide.

We also strive for sustainability from a programmatic perspective. We do this by embedding our programming into existing distribution/delivery systems where possible, such as working with a medical school at a university to train practitioners treating patients with ID, instead of SO being the entity providing the training. We provide tools to allow these programs to run independently without SO oversight, which helps limit expenses long-term.

This project is supported by two core partners who support international programming (Golisano Foundation) and programming within the US (US Centers for Disease Control). These two partners account for about $5 million and $10 million respectively, annually. In addition, a number of other corporate and private donors as well as foundations and grant makers account for an additional $4m annually, which is secured centrally or at local and country levels; and an additional $2+m of value-in-kind is secured annually.

All of the above funds are received in the form of grants or donations as no revenue is derived through equity or revenue generation. Given the significant barriers faced by people with ID to accessing quality health care, all services are provided free of charge to those with ID and their families and in-country implementation is strongly supported through a wide cadre of clinical and non-clinical volunteers.

In order to sustain growth, and provide additional scale, over the next 5 years it is projected that a minimum of $150 million will need to be secured, beginning with $25 million for the next year (2021) and expanding to $50 million by 2025. The majority of these funds (80%) would be received and managed centrally with subgrants issued for country- through local-level programming. Exploring additional avenues of revenue generation at all levels without compromising the zero fee-for-service principle is of great importance. These avenues include reimbursement models appropriate to governmental and private insurance schemes that might be applied for different aspects of programming and services.

For the 2020 fiscal year, the projected expenses globally are in the range of $20 million. Almost $17 million has been secured and support for the balance is being actively sought. We expect to expand our footprint to new countries to reach over 100 Healthy Communities. Driving that reach, most programmatic funds will be issued in the form of subgrants to support country, state and local level implementation in addition to central strategic leadership, technical support, monitoring and evaluation. We are actively engaging potential partners to secure more robust digital systems that are better aligned our long-term vision.

This year, funds will be utilized towards activities to address COVID for people with ID. Funds that would previously have been allocated for travel and conferences have been repurposed for specific COVID prevention education targeting people with ID. Locally, expenditures on items such as travel, meals and transport are being shifted towards telecommunications, to reach people with ID for ongoing health, fitness and coping skills while at home and to perform programmatic evaluation. Funds that would have been spent on in-person screening events are being shifted to developing and testing telehealth visits. In-person train-the-trainer funding will be repurposed to transition to online training. Training is elevated in importance and scale this year, reflecting the planned growth. Funds will support the development of new modules, content, translation, and instructive videos.  Advocacy funding will remain relatively constant, though focusing on prioritizing health care for people with ID during COVID, including proper testing and treatment.

Winning an Elevate Prize would expose this project to a large group of fellow changemakers that could truly put us in a completely different world. I gladly welcome support in any area, but the following are most relevant:

Funding & Revenue model –support creating sustainable revenue models appropriate across various countries and contexts. 

Legal or regulatory matters—especially outside of the US regarding developing governmental funding sources and models as well as in understanding regulation regarding telehealth.

Marketing, Media & Exposure – support in spreading our message at scale. Most people have no knowledge of the barriers that people with ID face in the health systems globally nor do they know the positive solutions this project provides.

Other –We are working to better connect people with IDD to health care follow-up in communities through a digital tool for geo-mapping. We’d welcome support from others in developing and establishing this digital platform.

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