About the project
I/DD Counts is a cross-agency initiative to:
- Establish and maintain accurate data on the prevalence of intellectual and developmental disabilities (I/DD) in the United States and its territories, and;
- Improve the collection, analysis and interpretation of the health-related data of people with I/DD.
The goal of the initiative is to increase our collective understanding about factors that affect the health and well-being of people with I/DD, which will in turn support development of effective policies and programs to support them and their families.
ACL is leading the I/DD Counts initiative in partnership with self-advocates, advocacy organizations, researchers, and the following U.S. Department of Health and Human Services partner agencies:
- Assistant Secretary for Planning and Evaluation (ASPE)
- Centers for Disease Control and Prevention (CDC)
- Centers for Medicare & Medicaid Services (CMS)
- National Institutes of Health (NIH)
Partners are currently working with stakeholders developing a 10-year plan to guide the development of the health surveillance system for people with I/DD.
Why this is important
Although public health surveillance of people with disabilities has improved, the lack of data on the health of people with I/DD persists. Health surveys often exclude I/DD altogether, and when information about people with I/DD is collected, it often lacks demographic data, such as age, sex, ethnicity and race. In addition, the way data is collected varies widely between states and even within states. In many cases, I/DD is not tracked at all unless a person is receiving services through a state or federally funded program.
The lack of data leads to health disparities in a number of ways. For example, the lack of prevalence data can affect availability of funding and other resources, since allocation is often based on population size.
It is more difficult to identify issues that may uniquely or disproportionately affect people with I/DD, or to identify groups within the population of people with I/DD who may be disproportionately affected by any given issue. This can result in policies and programs do not meet the needs of people with I/DD as well as they could – or needs that are not being addressed at all.
The COVID-19 pandemic starkly illustrates the problem. People with I/DD were among those at highest risk of death or serious illness, but lack of data hamstrung efforts to mitigate that risk. Most states tracked and reported infections and deaths among people with I/DD living in nursing homes and larger facilities, but not among those who live with their families or in smaller group homes. This masked both the incidence of infection and the risk of poor outcomes, which in turn led to people with I/DD being excluded when limited vaccine supply required risk-based prioritization Lack of data continues to make it impossible to measure the true impact of the pandemic among the I/DD population,
Being counted is a health equity and civil rights issue. ACL believes having reliable health data is a core principle in order to more effectively support people with I/DD and the systems that support them. I/DD Counts aims to be that reliable resource tool to improve the nation’s health surveillance system for people with I/DD.
- Working Through the Data Conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys (ACL)
- Enriching our Knowledge: State and Local Data to Inform Health Surveillance of the Population with Intellectual and Developmental Disabilities (ACL)
- Road Map – Milestones for Advancing Knowledge on the Prevalence and Health Status of Individuals with Intellectual and Developmental Disabilities
- ASPE Project webpage: Integrated Dataset on Intellectual and Developmental Disabilities (iDIDD)
- Considerations for Building Federal Data Capacity for Patient-Centered Outcomes Research related to Intellectual and Developmental Disabilities (ASPE)
- Final report: COVID-19 and People with ID/DD Final Report (ASPE)
- Issue brief: COVID-19 Data on ID/DD (ASPE)
- Improving Health Care for Adults with Disabilities: An Overview of Federal Data Sources (CMS)
- Research on Developmental Disabilities (CDC)