Much of the attention in the intellectual and developmental disabilities (I/DD) service system focuses on the development, financing, and delivery of long-term services and supports (LTSS) to assist individuals to live fulfilling lives in the community. The effectiveness of current federally funded service delivery models, health care utilization and costs for individuals with I/DD, and the interplay between physical, dental, and behavioral health care and LTSS remains largely unexplored. An I/DD diagnosis has been identified as a risk factor for health disparities in Ohio (Prokup, Andridge, Havercamp, & Yang, 2017). The Center for Epidemiologic Research for Individuals with I/DD proposes to address this gap in knowledge by using epidemiological data to build an inclusive culture of health for a diverse community.

Epidemiology is the medical science that deals with the incidence, distribution, and control of disease in a population.  Today’s health care system does not reflect a well-developed epidemiological understanding of the I/DD population which may contribute to poor health outcomes and inadequate access to health care services. Challenges to good health outcomes for individuals with I/DD can include;

  • Disproportionately higher rates of preventable mortality, co-morbidities, and chronic conditions among adults with I/DD
  • Less access to preventative care
  • Cognitive challenges which reduce understanding of health care by the population and perhaps reduce the ability to self-report and seek needed services
  • Lack of research focused on this population’s needs
  • Lack of formal training of health care providers to effectively serve persons with I/DD.

States and the Centers for Medicare and Medicaid Services are beginning to emphasize care management efforts; improve person-centered care; and continue the transformation of Medicaid’s delivery of LTSS to achieve community integration. As the healthcare system undergoes these reforms, it is important to take a closer look at how individuals with I/DD interact with the healthcare system.