People with IDD face stigma and unique communication barriers when accessing the health system and interacting with health workers. Comprehensive, evidence-based training can help bridge the gap between patients and providers.
Make Training Comprehensive and Inclusive
- Require evidence-based training for all health and care professionals, starting in school with mandatory curricula and education and continuing throughout their careers with continuing professional development.
- Use diverse learning methods like case studies, simulation-based learning, and didactic sessions.
- Involve people with IDD in experiential learning by designing and delivering trainings that—when appropriate—includes people with as standardized patients.
- Tailor training approaches to address the varied needs of IDD patients while also meeting the needs of all types of providers, from doctors to support workers to traditional healers.
Track Progress with Meaningful Metrics
- Adopt standardized, measurable indicators to monitor progress, like patient satisfaction, accessibility, and health outcomes.
- Build accountability by integrating these indicators into national health system evaluations.
Make People with IDD Visible in the Health System
- Depict people with IDD in health system materials to demonstrate that health services are for all.
- Include people with IDD in the health workforce, in roles like patient navigators, to support person-centered care and challenge stereotypes.
Bilal is the third of his parents’ children with IDD. Experience with Bilal’s older siblings made his parents attuned to child development and forged their advocacy skills. Even still, Bilal encountered numerous barriers and had negative experiences with the health system in his home of Karachi, Pakistan.
As Bilal grew older, his parents noticed he watched TV at an unusually close distance. Bilal’s parents took him to visit four or five ophthalmologists, but none could determine his prescription. Bilal couldn’t read the letters they asked him to identify. They tried using dilating drops, but even then, they couldn’t assign a proper diagnosis. Even the best eye-specialists in the city refused to test and provide the correct lens number.
With the help of Special Olympics Pakistan, Bilal’s parents took him to an institution that partners with Special Olympics on eye screenings, following a protocol that includes the use of the symbol, rather than letter, -based LEA acuity eye chart.
“There we were able to get the number in four or five minutes. And it was a perfect number,” says Bilal’s father, Imran. People working at that institution know how to work with those with disabilities who, as Imran observes, “may be verbal, but have difficulty in understanding what the doctor is saying.”
Bilal’s story highlights a critical gap in health and care workforce training and underscores the transformative impact that inclusive approaches can have in meeting the health needs of people with IDD.
Take Action
Make training for inter-professional health and care teams mandatory in curricula, accreditation, and continuing professional development, incorporating people with IDD in the development and delivery of training.