Data Collection Legislative Agenda for the 112th Congress (2011-2012)

The collection of accurate data on the incidence, prevalence, and wellbeing of individuals with developmental disabilities is essential to informing public policy. Significant gaps in data collection exist. Many national surveys still do not include questions that identify disability in a consistent manner. Different definitions of disability and measures of disability across various surveys make it difficult to assess the status of people with disabilities and identify trends. Consequently, there is no comprehensive data on individuals with developmental disabilities and their families. 

The 112th Congress should:
  • Establish an Office of Disability Statistics; charge this office with consulting with federal and state agencies, disabilities advocates, and other stakeholders to develop common definitions of terms, including developmental disabilities and intellectual disabilities, so that data collected from various sources can be meaningfully reported, compared, and interpreted. This office should be empowered to work with other appropriate agencies and use the common set of questions about disability in national surveys, as included in the American Community Survey and the Current Population Survey; and

  • Provide funding to improve and expand the collection and publication of population-based and other data regarding our constituents, and as appropriate, other disabilities.

Legislative Agenda Partners

We are national organizations that serve and advocate for people with intellectual, developmental, and other disabilities. We work together to shape, expand, and protect a strong federal role that provides vital benefits, services and supports and assures civil rights for our constituency.