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. 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 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. 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.

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. 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.

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. METHODS: Lessons learned from conducting a systematic review of Americans with Disabilities Act (ADA) employment research are explained and contextualized within research on barriers and facilitators to successful knowledge translation. RESULTS: Steps from the research protocol are described to provide a procedural framework for integrating stakeholder feedback into the review process. Descriptive mapping, an analytical technique most commonly used in scoping reviews, was deemed necessary to provide a clearer understanding and overview of the diverse body of research evidence. CONCLUSIONS: Stakeholder feedback can address barriers to knowledge translation by engaging end-users of research products throughout the review process. Given the growing scholarly recognition of qualitative and mixed-methods techniques as suitable approaches for systematic review, there is further need for consideration on how these approaches can benefit from more participatory research processes.

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. 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.

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. OBJECTIVES: This article explores the challenges, benefits, and procedures for conducting rigorous exploratory scoping reviews of diverse evidence. METHODS: The article expands upon Rumrill, Fitzgerald and Merchant's framework and considers its application to more heterogeneous evidence on the impact of social policy. RESULTS: A worked example of a scoping review of the Americans with Disabilities Act is provided with a procedural framework for conducting scoping reviews on the effects of a social policy. The need for more nuanced techniques for enhancing rigor became apparent during the review process. CONCLUSIONS: There are multiple methodological steps that can enhance the utility of exploratory scoping reviews. The potential of systematic consideration during the exploratory review process is shown as a viable method to enhance the rigor in reviewing diverse bodies of evidence.

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. OBJECTIVES: The purpose of this supplement is to begin to bridge the gap between research on racial and ethnic health disparities and research on disability-related health disparities. RESULTS: The papers in this supplement examine evidence of racial and ethnic disparities within various populations of people with disabilities, and explore unique issues at the intersection of disability, race, and ethnicity. CONCLUSIONS: The studies in this issue provide a starting point, and are intended to serve as an impetus for building a more robust literature on health care issues impacting the expanding segment of United States population that both experience disability and belong to racial and ethnic groups other than non-Hispanic white.

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. Final item selection was based on analyses of factor structure, demographic bias, variance in likelihood of endorsement, and item-total correlation. Psychometric properties were demonstrated through differential item functioning analyses, factor analyses, correlations, and item response theory analyses. RESULTS: The results supported a four-domain conceptual model of HRQOL (physical health, mental health, social health, and life satisfaction and beliefs) for a 42-item HRQOL measure with an ancillary 15-item environment scale. The measure has strong internal consistency (α = 0.88-0.97), known-groups validity, and test-retest reliability (r = 0.83-0.91). Tests of convergent and divergent validity confirmed the ability of the Function-Neutral Health-Related Quality of Life to measure health while being relatively free of content assessing function. CONCLUSIONS: A conceptually grounded four-domain, function-neutral measure of HRQOL that is appropriate for use with persons with and without various functional limitations was developed.

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. 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.

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. 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 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. METHODS: Reflecting the International Classification of Function, Disability, and Health, distinctions among the concepts of health, function, and disability are reviewed. Implications of confounded health measurement are discussed in terms of monitoring health status, assessing health disparities, using health as a mediator or moderator of other outcomes, and assessing effectiveness of interventions. The problem of function confounded with health measurement is illustrated with findings using the SF-36 with persons with spinal cord injury. RESULTS: Recommendations are provided for developing function-neutral measures of perceived health status. CONCLUSION: New measures of perceived health status are needed that do not confound function with health.

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. 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.

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." 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.

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. The overwhelming majority were unemployed. Implications of the low-income profile and potential underutilization of employment services was discussed.