Center for Epidemiological Research for Individuals with Intellectual and Developmental Disabilities
Dr. Lisa Mathis
Dr. Maryse Amin
CERIIDD: Improving the lives of individuals with ID/DD; Identifying epidemiologic information and evidence-based strategies to improve physical and behavioral health care.
Epidemiology is the medical science that deals with the incidence, distribution, and control of disease in a population. Unfortunately, today’s health care system does not have a well-developed epidemiological understanding of the I/DD population. This, in turn, may contribute to the poorer health outcomes and inadequate access to health care services experienced by this population. Challenges to good health outcomes 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.
Understandably, much of the attention in the I/DD service system in recent years focuses on the development, financing, and delivery of long-term services and supports to assist individuals to live fulfilling lives in the broader community. These efforts, supported by public policy as well as by family, friends, and caregivers, have helped to reverse decades of segregation and isolation for individuals with I/DD.
However, as the health care system undergoes reforms designed to improve health outcomes and assure universal access to health insurance and health care across the nation, it is important to take a closer look at how individuals with I/DD interact with that system. States and the Centers for Medicare and Medicaid Services are beginning to emphasize improved health care outcomes, population health and lower costs; efforts to better integrate physical and behavioral health care with LTSS to achieve improved person-centered care; and continuing the transformation of Medicaid’s delivery of long-term services and supports to achieve community integration for individuals with chronic and disabling conditions. As a result, there is a renewed focus on reducing health disparities within our nation’s health care system.
The Center for Epidemiological Research for Individuals with Intellectual and Developmental Disabilities (CERIIDD) provides information and strategic direction to policy makers, payers and providers of service utilizing data-driven research to improve health care outcomes for individuals with intellectual and other developmental disabilities (IDD) at reduced costs. Building on an extensive network of collaborative partnerships, CERIIDD collects and critically evaluates data unique to the I/DD population and offer solutions that will benefit all stakeholders.
CERIIDD will focus its efforts and target its approaches to three entities primarily responsible for the structure and implementation of health care and long-term services and support systems (LTSS):
Policy Makers: Federal, State and Local Government and the Legislature
Payers: Federal, State and Local Government and Managed Care Organizations
Providers of Health Care Service: Health Care providers and long-term services and support providers
Current CERIIDD Research:
Snapshot of Individuals with Intellectual and Developmental Disabilities and Healthcare
States’ Fiscal Effort for Services for Individuals with IDD and Medicaid Expansion
Additional Related Research:
2015 National Healthcare Quality and Disparities Report and 5th Anniversary Update on the National Quality Strategy. Rockville, MD: Agency for Healthcare Research and Quality; April 2016. AHRQ Pub. No. 16-0015.
Krahn, G. L & Fox, M. H. (2014). Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do? J Appl Res Intellect Disabil. 27(5), 431–446.2014. doi:10.1111/jar.12067.