In India, it took Jyothi’s family years to realize that she had developed hearing loss. They thought she was slow to grasp things and express herself because of her disability, but none of her doctors recommended a hearing test. Elisa traveled to Abu Dhabi to represent Rwanda at a global competition. That was the first time doctors did an eye exam and other health screenings to learn that his declining football skills were not due to his intellectual disability, but a lymph node that led to vision loss and major breathing problems. And in Uganda, parents took their daughter Joyce, who suffers from cerebral palsy, to a doctor untrained to work with people with disabilities. He advised them to dig a hole in the ground, stand their daughter in it, and pack dirt around her to “straighten her bones”.
This is a public health crisis, and Special Olympics recognizes the urgent need for improved access to health care and disease prevention programs for people with intellectual disabilities. An effective health system serves all people with equal access to care, services and information in a manner that is accessible, affordable, and appropriate to their needs.
Most health systems, especially in low- and middle-income countries, are not equipped to meet the needs of people with intellectual disabilities, even for primary care. Social stigma, a shortage of doctors and medical supplies, and long queues at health facilities are among the challenges that people with intellectual disabilities face when trying to access health services. Many primary care providers automatically refer patients with intellectual disabilities to specialists because they don’t feel comfortable treating such patients or they assume specialized care is needed. These biases, combined with the high cost and low availability of specialist care, limit access even to the most routine of check-ups, squeezing people with intellectual disabilities out of the health system.
If we are to realize the 2030 United Nations Sustainable Development Goal of healthy lives and well-being for all, among other national and international public health commitments, people with intellectual disabilities cannot be left behind.
Since 1997, the Special Olympics Health Program has been leading the way to build an ecosystem that supports inclusive policies and action by partnering with UN bodies, governments, corporations, public and private health providers, academic institutions, and NGOs to provide health services, programming and education to people with intellectual disabilities and their families. We have come a long way, for in December 2018, the United Nations Flagship Report on Disability and Development concluded with a four-point roadmap to move towards a global development agenda that was inclusive of people with intellectual and other disabilities.
At Special Olympics, our goal is to improve access to quality health care for 11 million people with intellectual disabilities by 2020. Unlocking both basic and critical health services for people with intellectual disabilities allows them to take advantage of educational opportunities, employment, sports, and other pathways to reach full participation in society.
To date, we have trained more than 260,000 medical students and health professionals to deliver higher quality health care to people with intellectual disabilities—and not just Special Olympics athletes—in their own communities. We have also amassed the world’s largest data set documenting the health disparities facing people with intellectual disabilities. And through a network of advocates and leaders promoting inclusive health, we provide health screenings in optometry, audiology, physical therapy, podiatry, dentistry and other areas to identify the prevalence of health problems, monitor changes in health, and tailor local programming.
Realizing equal access to quality health care for people like Jyothi, Elisa and Joyce, and millions like them with intellectual disabilities around the world, would be nothing short of life-changing. Whether you have a disability or not, we all deserve a healthcare system that treats us with compassion and care.
Read more content by Kristin Hughes Srour, Special Olympics Senior Director, Global Health Programs