People with intellectual disabilities face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services.
BY KRISTIN HUGHES SROUR, MBA
If you want to help straighten her bones, dig a hole in the ground, have your daughter stand in it and then pack it with soil. Do this every day for six hours. This was the advice that 10-year old Joyce Ainensasi’s parents were given to help their daughter with cerebral palsy stand and walk. As loving parents who wanted the best for their daughter, they followed the advice. So every day, for six hours, Joyce would stand in a hole packed with dirt patiently waiting for the treatment to work.
Joyce lives in Kiwanga, Uganda, a suburb of the capital city Kampala. Her story is repeated again and again across the world in both developed and developing nations. People with intellectual disabilities (ID) face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services. This is why for over 20, Special Olympics has been training health care providers and bringing health screenings to people with ID in over 130 countries through its Healthy Athletes® program while simultaneously training healthcare providers at these events on how to work with people with ID and their families.
Additionally, six years ago, Special Olympics launched a program called Healthy Communities, made possible by the Golisano Foundation, which aims to provide equal access to quality healthcare for people with ID in communities all over the world. Healthy Communities addresses the severe health disparities faced by people with ID through both immediate and long-term community-centered solutions including providing ongoing health prevention programming, training health care providers, collaborating with governments, hospitals and community partners and developing self and family advocates.
In Uganda, Special Olympics Healthy Communities partnered with the Korea International Cooperation Agency (KOICA) to bring healthcare to people with ID. Last year, KOICA trained 95 local district health providers and Village Health Educators to identify people with ID and educate families on malaria prevention methods, as well as the signs and symptoms of malaria. The partnership between Special Olympics Uganda and KOICA also includes training coaches and family members how to do strength training exercises. Joyce’s father, George Abaho, was one of the family members to attend the trainings. He and the KOICA volunteers began working with Joyce, doing exercises on a daily basis to strengthen her legs and core. George learned that having Joyce stand in a hole in the ground every day was not going to improve her condition.
“When KOICA started doing exercise with Joyce, she got much better” says George. Joyce has grown stronger and she no longer stands in a hole in the ground all day. She is able to attend school and play with other children. “I feel good because I can walk like other children. I am also happy because I can feed myself, take myself to the bathroom, and play like any other child. I feel so grateful for this,” says Joyce.
The United Nations Convention on the Rights of Persons with Disabilities recognizes “the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” However, people with intellectual disabilities continue to face discrimination, lower quality of care, and as a result, drastic health disparities. People with ID are two times more likely to die before the age of 50 than adults without ID. Globally, adults with ID are more than two times likely to be obese compared to adults without ID. There is often a misconception that the poor health of people with ID is due to their disability. Research has shown that it is in fact a result of a breakdown in health education, health promotion, and health care. Over half of medical school deans and students report that graduates are “not competent” to treat people with ID.
Exceptional Parent Magazine; November 2017