Introduction
Intellectual and developmental disabilities (IDD) are impairments that present before 18 years of age which impact cognition, ability to learn, and adaptive behaviors such as activities of daily living. People with IDD experience disproportionate health challenges, including higher rates of diabetes, and are at higher risk of severe outcomes or death due to COVID-19. They receive prenatal care at lower rates and later than their peers and experience premature mortality.
Causes of Inequities for People with IDD
Unconscious bias, physical and logistical barriers to health care, and social determinants of health play a role in disparities for people with IDD. Difficulty communicating symptoms can lead to conditions going undiagnosed and untreated. Communication challenges can be compounded by provider biases such as diagnostic overshadowing. This refers to a scenario in which a clinician attributes a symptom or behavior to an individual’s disability rather than to an underlying treatable condition. For instance, challenges around mealtimes may be attributed to an individual’s intellectual disability rather than due to gastroesophageal reflux disease which causes discomfort when eating. This can result in lack of trust in health care providers and increased health disparities as symptoms go untreated.
Clinical guidelines can also contribute to inequities when they are not inclusive of people with IDD. One study found that the rate of publication of high impact research documenting disparities among people with IDD has declined over the past two decades. A lack of new of research may contribute to clinicians’ lack of evidence-based guidance when caring for people with IDD.
Next Steps
Understand the scope of health inequities experienced by individuals with IDD. Better measurement of the health inequities experienced by people with IDD is the first step to understanding and improving disparities. This includes proactively measuring the health and wellness of people with IDD. Listening to the lived experience of individuals with intellectual and developmental disabilities can also inform better measurement of their health outcomes.
Increase training for hospital staff and clinicians who will care for individuals with IDD. Training for health care staff is a critical step for improving care. This could include disability competence training as part of medical training, nursing programs, and certification programs for other health care staff. Training could be required by legislators, medical societies, and managed care organizations. Policymakers can support the implementation of these programs.
Promote programs that support health for people with IDD. While there are gaps in the literature for research such as intervention trials, inclusion of people with IDD in public health programs, promoting health among aging individuals with IDD, and addressing healthy lifestyles are ways to reduce disparities. Pilot programs to improve outcomes, which can be scaled up when successful is one strategy towards better outcomes.
More research, better education for staff across health care, and better data to measure inequities are all key to reducing disparities and ensuring the health and flourishing of people with intellectual and developmental disabilities.
Interested in learning more?
- Check out our podcast on Disrupting the Cycle: Improving the Navigation of Health Services for Black people with IDD
- Check out the Student National Medical Association (SNMA)’s work on addressing the needs of underserved communities. This P4HE partner organization aims to increase the number of culturally competent and socially conscious physicians, including those who care for patients with intellectual and developmental disabilities.
- American Academy of Developmental Medicine and Dentistry
- Developmental Disabilities Nurses Association
- Institute for Exceptional Care
- IntellectAbility and their Curriculum in IDD Healthcare