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BackgroundMethodsFindingsConclusionsAdults with intellectual and developmental disabilities (IDD) often have behavioral support needs that must be met in order to live in community settings. Pharmacotherapies are often used to meet such needs. We explored factors that predict medication for behavioral support among adults with IDD.We integrated three major U.S.- based IDD-specific datasets over multiple years, creating a large dataset. We used machine learning to build and test an algorithm to predict factors associated with the use of pharmacotherapies to address behavioral support needs for adults with IDD.Our algorithm correctly predicted the use of pharmacotherapies with about 79% accuracy. Top predictors of medication use to address behavioral support needs included disruptive behavior, use of medication to treat a mental health condition, and presence of an autism diagnosis.Use of behavior plans should be given more attention in conjunction with medication use, especially in relation to managing disruptive behavior. [ABSTRACT FROM AUTHOR]

Researchers and advocates have long called for improved research methods that better include people with intellectual and developmental disabilities (IDD), but challenges to doing so persist. Proxy responses are frequently used to circumvent some of these challenges, but may not fully capture the perspectives of people with IDD. The COVID-19 pandemic highlighted the possibility of consequences due to a lack of research about health outcomes for people with IDD, with documented disproportionate impact but little understanding about specific experiences for people with IDD. Using exploratory graph analysis (EGA) we explored the use of proxy responses on the COVID-19 Supplement of the National Core Indicators In-Person Survey. Findings suggest significant differences in response patterns between people who answered independently, via proxy, and with a mix of response types beyond what would be expected due to demographic differences in participants. [ABSTRACT FROM AUTHOR]

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process. [ABSTRACT FROM AUTHOR]

Objective: In the United States, people with intellectual and developmental disabilities (IDD) vote at significantly lower rates than people without disabilities and are underrepresented in the democratic process. This paper examines predictors of voting opportunity among people with IDD receiving state-funded disability services in Virginia. Method: We used secondary data from Virginia's 2017–2018 and 2018–2019 National Core Indicators In-Person Survey to conduct bivariate and regression analyses on possible predictors of voting opportunity identified from the literature. Results: Factors related to level of intellectual disability were significantly associated with having voting opportunity, as were several factors related to exercising other rights, including participating in the community and in self-advocacy training. Importantly, respondents who had participated in self-advocacy events were more likely to have voting opportunity and people with guardians were less likely to vote or to have had the opportunity. Conclusion: People with legal guardians may be the most likely to be excluded from the democratic process. Social workers and advocates seeking to increase voter turnout should strive to include people with more severe disabilities in self-advocacy events and other efforts to increase voting opportunity among people with IDD. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination. [ABSTRACT FROM AUTHOR]

Case management (CM) is one of the most commonly used services by individuals with intellectual and developmental disabilities (IDD), but little is known about the workers who provide CM. This study used a mixed methods approach to gain understanding of the CM workforce in one U.S. state. An online survey was completed by 35 IDD service directors (87.5% of directors in the state); and 113 CMs and CM supervisors participated in semistructured interviews and focus groups. Results indicated an annual crude separation rate of 28.2%, and participants often complained that turnover resulted in caseload sizes that prevented optimal outcomes for people with IDD. A limited applicant pool, duties focused on regulatory compliance, and inadequate wages were cited as major challenges for CMs. [ABSTRACT FROM AUTHOR]

Self-directed home and community based services (HCBS) waiver services and supports for people with intellectual and developmental disabilities (IDD) have become a viable and widely used method of service provision in the United States. Grounded in theories of self-determination, previous literature on self-direction has suggested high satisfaction and positive outcomes for people who use self-directed programs as well as cost savings for state IDD service systems. This study explored the ways in which state IDD service administrators think about how self-direction may be used as a method of achieving cost savings while providing opportunities for people with IDD and their families to exercise choice and control. Informed by 54 high-level IDD service administrators in 34 states, and guided by a thematic analysis approach to data interpretation, the study found evidence that administrators typically see strong potential for self-direction to have cost-savings benefits, while also fostering choice. In the current political climate, the need for cautious fiscal stewardship may become a stronger driving force behind self-direction for people with IDD in the United States. [ABSTRACT FROM AUTHOR]

Social inclusion for people with intellectual and developmental disabilities (IDD) is an issue of emerging importance in research, policy, and practice. Though strides have been made to improve community living, inclusive education, and improved employment opportunities for many individuals with IDD, social inclusion has been slower to evolve. A diverse group of stakeholders met at the National Goals 2015 Conference to develop the following set of goals designed to promote better social inclusion in the next 10 years: (a) develop measures for social inclusion, (b) examine how personal and community contexts shape inclusion, (c) embed measures of inclusion in research about other life domains, (d) build capacity for social inclusion, (e) identify best practices for promoting inclusion from the community perspective, and (f) understand life course trajectories that impact inclusion. The goals are discussed in more detail in this article. [ABSTRACT FROM AUTHOR]

Turnover among direct support professionals (DSPs) in community support settings for individuals with intellectual and developmental disabilities (IDD) has been regarded as a challenge since tracking of this workforce began in the 1980s. This study utilized a group randomized controlled design to test the effects of a competency-based training intervention for DSPs on site-level turnover rates over a one year period. Results suggested that, compared with the control group, sites receiving the training intervention experienced a significant decrease in annual turnover, when multiple factors were controlled. Implications, including the importance of considering quality training as a long term organizational investment and intervention to reduce turnover, are discussed. [ABSTRACT FROM AUTHOR]

Direct support professionals (DSPs) and frontline supervisors (FLSs) play an integral role in the lives of people with intellectual and developmental disabilities (IDD) and are often the individuals directly responsible for assisting people with IDD to live and fully participate in their communities. These two groups of workers have typically been employed at lower wages with limited access to fringe benefits, contributing to high rates of turnover compared to a similarly skilled worker in the United States. This article summarizes findings and is the first investigation in several years to systematically examine the wages, fringe benefits, and stability of the DSP and FLS workforces supporting individuals with IDD. Findings suggest that a typical DSP may expect to earn about $11.25 per hour, while FLSs may expect wages of about $15.45 hourly. Of concern, however, is that fringe benefit provision was quite limited in this sample. Implications, including relation to past reports of DSP workforce development, are discussed. [ABSTRACT FROM AUTHOR]