Race/ethnicity may be less of a factor in accessing preventive care among adults with ID/DD receiving services than among the general population.

No abstract

As a core unit of our society, the family provides support for all its members. Due to the nature of their disabilities, people with intellectual and developmental disabilities (IDD) often receive emotional, physical, and material support from their families across the life course. During the National Goals 2015 Conference, three goals were identified that will lead to a better understanding of families and maximize their capacity, strengths, and unique abilities to support, nurture, and facilitate opportunities for family members who have a disability. The three goals are to (1) develop a better understanding of the complex family structures in the United States and the best practices for supporting them; (2) extend our knowledge on how families are or might be supported by their natural communities, outside the purview of IDD systems; and (3) synthesize support practices, implementation strategies, and outcomes for supporting families. This article describes these three goals related to supporting families across the life course and provides a rationale, areas of research to address the goals, and implications for policy and practice for each goal.

No single U.S. health surveillance system adequately describes the health of people with intellectual and developmental disabilities (IDD). Researchers and policy makers have sought to understand the potential of state and local administrative and survey data to produce a local as well as a national picture of the health of the population with IDD. Analyses of these secondary data sources have significant appeal because of the potential to derive new information without the burden and expense of new data collection. The authors examined the potential for data collected by states and territories to inform health surveillance in the population with IDD, including data from the administration of eligibility-based supports, health insurance claims, and surveys administered for monitoring and quality improvement. Although there are opportunities to align and harmonize datasets to enhance the available information, there is no simple path to use state and local data to assess and report on the health of the population with IDD. Recommendations for policy, practice, and research include the development and use of consistent operational definitions in data collection, and research to fill knowledge gaps.