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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.

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.

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. (Contains 1 figure, 2 tables, and 1 note.)

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. women generally, based on a national sample of over 65,000 women drawn from the 1995 National Health Interview Survey. The sheltered sample presents significantly higher rates of mental conditions and functional impairments affecting their work, school, and social functioning. These women are also less educated and poorer and use more health services than the U.S. population. Mental health conditions must be identified in shelters to improve functioning and facilitate independence from abusers. (Contains 2 tables.)

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.

Background: The imbalance between the sheer size of the developing world and what little is known about the lives and life circumstances of persons with disabilities living there should command our attention. Method: International development initiatives routinely give great priority to the collection of statistical indicators yet even the most basic data on intellectual disability is lacking. In response to the recent adoption of the "international classification of function", numerous initiatives are attempting to expand and improve the quality of disability surveillance. Results: We argue that these efforts must not lose sight of the core focus and promise of disability statistics--that of advocacy and the elevation of a disability policy agenda. Conclusions: To this end, we weave throughout our analysis of the technical features of surveillance, reflections on the meanings we attach to disability statistics and by extension, disability itself.

Using a knowledge utilization framework in a mixed method design, the study evaluated how and why consumers and professionals used rehabilitation related technical assistance (TA) information. Brief interviews were conducted with 326 users of an Americans with Disabilities Act (ADA) information center. Narrative data were reduced via content analysis into dichotomous themes (e.g., needed legal clarification, working on policy changes) and statistically modeled using latent class cluster analysis methods. Four 'market segments' of users were identified: persons with a disability seeking an accommodation, professionals involved in structural design, other providers of TA, and those who sought out services based on credibility. Study implications are described in terms of looking beyond labels in identifying consumer needs, and the need to better understand the processes by which users translate information into outcomes., With the growth of disability-related initiatives in domestic policy making in the postwar era and passage of rights based legislation focused on access and service provisions, information dissemination and the [...]

Demographic features of Americans with mild intellectual disabilities were estimated in an analysis of the National Health Interview Survey. Comparison on basic indices of adaptive functioning and socioeconomic status suggests a large cohort of Americans who share support needs and social and economic vulnerabilities with the mentally retarded. Prevalence of intellectual disability/mental retardation was estimated to be 1.27%. (Contains references.) (DB)

A comprehensive national portrait of employment and income status of adults with developmental disabilities was estimated through secondary analyses of the 1990/91 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 employments and governmental benefits were both included. The overwhelming majority were unemployed. (Contains references.) (Author/DB)

This article presents childhood disability prevalence trends and their interaction with economic status. Estimates derived from National Health Interview Survey data (1983-96) indicate a significant increase in childhood disability rates. Analysis indicates a greater risk in single-parent households and a growing relationship between poverty and risk for disability. (Contains extensive references.) (Author/CR)

This study estimates a 1991 population of 2.97 million Americans with mental retardation, with 2.63 million living outside formal long-term care systems. Observations suggest that families are the dominant source of support, many live in households headed by aging family members, and there are significant economic disparities between family subgroups. (Author/CR)

This study, involving 49 adults with Down syndrome living with their families, explored the relationship of diet, exercise, disability status, and social integration to Body Mass Index (BMI), an indicator of excess weight and health status. BMI was found to be related to friendship, access to recreation, and social opportunities. (Author/CR)

A study of the prevalence of developmental disabilities in racial groups found the estimated rate was 1.1%, with the highest rate among blacks. Households that had individuals with developmental disabilities were lower income and more dependent on welfare programs. Minority status exacerbated differences in income and access to welfare. (Author/CR)

Annualized nonreimbursed spending by 99 Chicago-area households supporting an adult family member with a developmental disability was evaluated across 10 categories of daily living expenses and disability-related services. The average annual out-of-pocket cost was $6,348 with the percentage of household income represented by these costs increasing significantly as family incomes decreased. (Author/DB)

An empirical model of community services spending in the states for mental retardation and developmental disabilities was tested using cumulative community services fiscal effort across 1977-88. Strength of consumer advocacy organizations coupled with states' historical orientations toward policies promoting racial equality were highly significant predictors of state-by-state variance in spending patterns. (Author/DB)

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. women generally, based on a national sample of over 65,000 women drawn from the 1995 National Health Interview Survey. The sheltered sample presents significantly higher rates of mental conditions and functional impairments affecting their work, school, and social functioning. These women are also less educated and poorer and use more health services than the U.S. population. Mental health conditions must be identified in shelters to improve functioning and facilitate independence from abusers. Keywords: mental health; domestic violence; function; NHIS

A comparative analysis was made of the level of states' financial support for community and institutional mental retardation services (1977-1984). Among findings were that state size and wealth were poor predictors of community service fiscal effort. Degree of federal assistance was an inversely related predictor of institutional fiscal effort. (Author/JW)

The review of some recent studies on use of microcomputers in early childhood special education highlights methodological issues including the qualitative quantitative distinction and the interdependence of research design and interpretation. Imbedding qualitative methods into quasi- or true-experimental designs can provide more information than either method alone. (DB)

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. [ABSTRACT FROM AUTHOR]

A body mass index (BMI) greater than 27 has been cited as a risk factor for heart disease and diabetes mellitus resulting from excess weight. The purpose of this study was to determine the association between BMI (>27) and two other obesity indices--height-weight and percent body fat--as well as to investigate the relationship between BMI and three blood lipid parameters--total cholesterol, low-density lipoprotein cholesterol (LDL-C), and highdensity lipoprotein cholesterol (HDL-C) in 329 adults with mental retardation (MR). Males were significantly taller and heavier than females, but females had a significantly higher BMI. Kendall's Tau-C revealed a significant association between BMI and each of the following: height-weight, percent body fat, LDL-C, and HDL-C. However, there were a significant number of false negatives and false positives on each of the criteria. The congruence between at-risk BMI and two other obesity parameters (height-weight and percent body fat) in a population of adults with MR is not strong. Professionals should employ the BMI along with skinfold measures to assess a person's at-risk status for excess weight. [ABSTRACT FROM AUTHOR]

Little data exist on the comparison of blood lipids and percent body fat between Down Syndrome and non-DS adults with mental retardation (MR). The following study was undertaken to determine if there were physiological and biochemical differences between these two groups. Subjects included 294 non-DS adults with MR (162 males and 132 females) and 31 adults with Down Syndrome (21 males and 10 females). Level of mental retardation was similar for both groups (males/females, Down vs. non-DS). A two-factor ANOVA with a regression approach was used to analyze the data. Results of the study found that there were no significant differences between the Down Syndrome and non-DS subjects on total cholesterol, HDL cholesterol, LDL cholesterol, triglycerides, or percent body fat. The present study suggests that the composition of lipoproteins and storage of body fat are similar in Down Syndrome and non-DS adults with mental retardation, and that the risk for developing coronary heart disease appears to be the same for both groups. [ABSTRACT FROM AUTHOR]

This article presents childhood disability prevalence trends and their interaction with economic status. Estimates derived from National Health Interview Survey data (1983-1996) indicate a significant increase in childhood disability rates. Increased risk for disability was among constituencies defined by poverty and single-parent families. Analysis suggests three dynamics: (a) greater risk in single-parent households, (b) no incremental risk associated with racial or ethnic status after controlling for poverty, and (c) a growing relationship between poverty and risk for disability. Implications were discussed in terms of a "new universe" of disability and the importance of education's involvement in broader national social policy and advocacy., The heightened risk for disability embedded in the conditions of poverty are common themes in the national dialogue on child welfare (Center for Vulnerable Populations, 1992; Pianta, 1990; Sherman, 1994). [...]