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Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.

Background: U.S. adults with intellectual and developmental disabilities (IDD) have poorer health status and greater risks for being overweight and obese, which are major drivers of health care expenditures in the general population. Health care expenditures and IDD have not been studied using nationally representative samples, and the impact of overweight and obesity have not been examined., Aim: Using nationally representative data, we aimed to compare the health care expenditures of not-overweight, overweight and obese U.S. adults with IDD, and calculate model-adjusted expenditures., Methods and Procedures: Pooled data from the 2002-2011 Medical Expenditure Panel Survey linked to National Health Interview Survey (n = 1224) were analyzed. Two-part model regressions were conducted, with covariates being year of survey, age, sex, race/ethnicity, household income status, geographical region, urban/rural, marital status, insurance coverage, perceived health status, and perceived mental health status., Outcomes and Results: Overall, obese adults with intellectual and developmental disabilities had higher expenditures than their non-obese peers. Being obese was associated with an estimated additional $2516 in mean expenditures and $1200 in median expenditures compared with the reference group, who were neither overweight nor obese., Conclusions and Implications: Obesity is an important predictor of higher health care costs among community-living adults with IDD Finding effective strategies and interventions to address obesity in this population has great financial and policy significance., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following passage of the Patient Protection and Affordable Care Act.

Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we examined racial and ethnic disparities in health status among adults with IDD, and investigated differences in health status between adults with IDD and nondisabled adults within each racial and ethnic group. We found that Latino and Black adults with IDD had worse health outcomes compared to White adults with IDD, and Latino and Black adults with IDD had worse health outcomes than nondisabled adults from the same racial and ethnic group.

Self-reported health is an important outcome in the evaluation of health care but is largely ignored in favor of proxy-based reporting for people with an intellectual disability. This study briefly reviews the role of self-report in health assessment of people with intellectual disability and the challenges and recommendations that have emerged from the considerable body of research on interviewing and self-report. Limitations in current recommendations are addressed from the perspective of the cognition of self-report. The review describes conceptual directions for the reconciliation of the two contradictory themes in the treatment of self-report: the centrality given to personal perceptions and choices and the methodological concerns over the meaningfulness and validity of the self-reporting process.

Background: Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare., Method: The status of ID data was evaluated in a review of 12 national statistical systems. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed., Results: A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data., Conclusions: The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved.

The forces shaping intellectual disability policy-making are diverse; while many of the policy issues reviewed in this issue are specific to intellectual disabilities, there are others that transcend disability-specific concerns. Our review is organized around six emerging demographic and socio-cultural trends that may directly and profoundly impact the intellectual disability field: aging, changing labor markets, immigration, families, federalism, and culture. Each of these trends is discussed in terms of their relevance and potential impact on disability policy., ((c) 2007 Wiley-Liss, Inc.)

Demographic features of Americans with mild intellectual disabilities were estimated in an analysis of the National Health Interview Survey. The cohort was compared to the population of the United States, persons with specific learning disabilities, and persons with mental retardation. Comparison on basic indices of adaptive functioning and SES suggest a large cohort of Americans who share many support needs and social and economic vulnerabilities with those labeled "mentally retarded." The combined prevalence of intellectual disability/mental retardation was estimated to be 1.27%. Implications are discussed in terms of the "forgotten generation" report of the 1999 President's Committee on Mental Retardation and evolving conceptions of mental retardation.

A comprehensive national portrait of employment and income status of adults with developmental disabilities was estimated through secondary analyses of the 1990 and the 1991 Survey of Income and Program Participation. Results indicate that the majority of adults with developmental disabilities had very limited economic resources, even when earnings from employment and benefits from governmental income support programs were both included. The minority, who worked in a variety of occupations, were earning higher incomes than previous estimates. The overwhelming majority were unemployed. Implications of the low-income profile and potential underutilization of employment services was discussed.