Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.

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.

Health Services Use and Costs for Americans With Intellectual and Developmental Disabilities: A National Analysis.

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.

Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities.

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.

Systematic review and Knowledge Translation: A framework for synthesizing heterogeneous research evidence.

Background: Participatory methodologies in disability and rehabilitation research are used to capture the perspectives of people with disabilities and to recognize the agency of stakeholder groups. Existing resources for conducting systematic reviews seldom provide details about how to integrate stakeholder input into the methodological process.

Objectives: This article considers how knowledge translation strategies can support and advance systematic reviews that include diverse types of research.

Racial and Ethnic Health Disparities Among People With Intellectual and Developmental Disabilities.

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.

Enhancing rigor and practice of scoping reviews in social policy research: considerations from a worked example on the Americans with disabilities act.

Background: There is increasing theoretical consideration about the use of systematic and scoping reviews of evidence in informing disability and rehabilitation research and practice. Indicative of this trend, this journal published a piece by Rumrill, Fitzgerald and Merchant in 2010 explaining the utility and process for conducting reviews of intervention-based research. There is still need to consider how to apply such rigor when conducting more exploratory reviews of heterogeneous research.

Promoting a new research agenda: health disparities research at the intersection of disability, race, and ethnicity.

Background: Differences in access to and receipt of health care have been extensively documented across racial and ethnic groups. Similarly, a growing body of research has documented disparities between people with and without disabilities in obtaining needed health care. However, our understanding of the intersection of disability with race and ethnicity in health care is very limited.

Development and psychometric assessment of the function-neutral health-related quality of life measure.

Objective: The aim of this study was to determine the conceptual framework, item pool, and psychometric properties of a new function-neutral measure of health-related quality-of-life (HRQOL).

Design: This is an expert panel review of existing measures of HRQOL and development of a conceptual model, core constructs, and item pool and a validation by experts in specific disabilities and in cultural competence. Items were cognitively tested, pilot tested for functional bias, field tested with a national sample of adults with various limitations, and reliability tested via repeat administration.

Self-reported health of people with intellectual disability.

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.

Make measurable what is not so: national monitoring of the status of persons with intellectual disability.

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.

The dilemma of measuring perceived health status in the context of disability.

Background: Advances in the conceptual differentiation of health from disability have not been incorporated in popular measures of perceived health status. The inclusion of function in the measurement of health presents a dilemma for researchers assessing the perceived health of people with functional limitations.

Objectives: The purposes of the present paper are to identify this problem in health measurement, describe its implications for disability and health researchers, and outline potential strategies for future measure development of perceived health status.

Mental health disorders and functioning of women in domestic violence shelters.

This study investigates the presence of mental health symptoms and disorders reported by 74 women in a domestic violence shelter and the impact of those symptoms on function in work, school, and social encounters. Findings are compared to estimates of U.S.

Emerging policy challenges in intellectual disabilities.

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.

Continuum of intellectual disability: demographic evidence for the "forgotten generation".

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.

Employment and income status of adults with developmental disabilities living in the community.

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.