Straight from the horse's mouth: Increasing self-report in mental health assessment in individuals with intellectual disability.

BACKGROUND: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. METHOD: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. RESULTS: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. CONCLUSION: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research.

Invisible populations: Who is missing from research in intellectual disability?

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the "hidden majority." Very little is known about the health and well-being of these adults. It remains to be seen if the hidden majority is comparably susceptible to mental health difficulties, given how little is known about this population by DD systems. The purpose of this manuscript is to highlight where one may identify individuals belonging to this hidden population and how researchers might effectively recruit from this group so as to ensure more representative samples of all people with IDD.

Unlocking the Potential of State Level Data: Opportunities to Monitor Health and Related Outcomes in People With Intellectual and Developmental Disabilities.

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.

A Structured Approach Using the Systematic Review Data Repository (SRDR): Building the Evidence for Oral Health Interventions in the Population With Intellectual and Developmental Disability.

BACKGROUND: This review describes the methods used for a systematic review of oral health intervention literature in a target population (people with intellectual and developmental disability (I/DD)), which spans a broad range of interventions and study types, conducted with specialized software. OBJECTIVE: The aim of this article is to demonstrate the review strategy, using the free, online systematic review data repository (SRDR) tool, for oral health interventions aimed at reducing disparities between people with I/DD and the general population. RESEARCH DESIGN: Researchers used online title/abstract review (Abstrackr) and data extraction (SRDR) tools to structure the literature review and data extraction. A practicing clinician and an expert methodologist completed the quality review for each study. The data extraction team reported on the experience of using and customizing the SRDR. RESULTS: Using the SRDR, the team developed four extraction templates for eight key questions and completed extraction on 125 articles. CONCLUSIONS: This report discusses the advantages and disadvantages of using an electronic tool, such as the SRDR, in completing a systematic review in an area of growing research. This review provides valuable insight for researchers who are considering the use of the SRDR.

Pregnancy Outcomes Among U.S. Women With Intellectual and Developmental Disabilities.

The existing research on pregnancy outcomes for women with intellectual and developmental disabilities (IDD) is sparse. This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared deliveries among women with IDD (n = 340) to the general obstetric population. Women with IDD had longer hospital stays and were more likely to have Caesarean deliveries in contrast to other women. Rates of adverse pregnancy outcomes were elevated for women with IDD across a range of measures, including early labor, preterm birth, and preeclampsia, and their infants were more likely to have low birth weight, even after adjusting for age, race, ethnicity, and insurance type. Targeted interventions are needed to address these deleterious outcomes.