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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., (©AAIDD.)

Background: People with intellectual and developmental disabilities (IDD) were disproportionately affected by the COVID-19 pandemic. Predicting COVID-19 infection has been difficult., Objective: We sought to address two research questions in this study: 1) to assess the overall utility of a machine learning model to predict COVID-19 diagnosis for people with IDD, and 2) to determine the primary predictors of COVID-19 diagnosis in a random sample of Home and Community Based Services users in one state., Methods: We merged three major IDD-specific datasets (National Core Indicators, Supports Intensity Scale, Medicaid HCBS expenditures) from one state to create one combined dataset for analyses that included more than 700 variables. We then built a random forest machine learning algorithm to predict COVID-19 diagnosis and to explore the top predictors of such a diagnosis, when present., Results: Our algorithm predicted COVID-19 diagnosis in a random sample of HCBS users with IDD with 62.5% accuracy. The top predictors of having a documented case of COVID-19 among our sample were higher age, having high overall, medical, or behavioral support needs, living in a lower-income neighborhood, total Medicaid expenditure, and higher body mass index., Conclusions: Results largely followed trends in the general population, and were largely suggestive that increased contact with other people may have exposed a person with IDD to greater COVID-19 risk., Competing Interests: Declaration of competing interest The authors do not have any conflicts to declare., (Copyright © 2024 Elsevier Inc. All rights reserved.)

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., (©AAIDD.)

People with intellectual and developmental disabilities (IDD) have higher incidences of mental health conditions and behavioral support needs than people without IDD but may not receive needed care from community providers. We examined rates of co-occurring conditions in a representative sample of adults with IDD who use state funded services in Virginia. Using data from two datasets, we identified four categories of mental health and behavioral conditions. We used these categories to examine differences in individual- and system-level factors in people with and without co-occurring conditions. We found high rates of co-occurring conditions in our sample. We found important disability factors and system-level characteristics that were associated with having a diagnosed mental health condition or behavioral support needs. Differing patterns of diagnosis and treatment for co-occurring conditions suggests more work needs to be done to support people with IDD and co-occurring mental health conditions living in the community., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Researchers used a merged dataset to examine if more resources were expended on those with greater support needs and if support needs impacted personal outcomes when controlling for relevant personal and contextual factors. Results indicated that the amount of support a person receives had a direct relationship to their needs. However, we also found that people with the greatest needs had weaker personal outcomes suggesting that distribution of resources based on need may not result in equivalent outcomes. The authors suggest strategies at an individual and systems level to address the outcomes gap for people with the greatest support needs., (©AAIDD.)

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., (©AAIDD.)

Background: People with intellectual and developmental disabilities (IDD) tend to have poor employment outcomes relative to the general population, as do people with autism. Research is unclear, however, about how people with IDD with and without autism compare on a variety of employment-related indicators, including desire to work, having work as a goal in their service plans, and being employed., Objectives: To understand how people with IDD with and without autism compare on important employment related outcomes, based on a matched random sample., Methods: Using merged administrative datasets, we used propensity score matching to construct statistically proximate samples of Medicaid waiver users in a single state with IDD both with and without autism, and then tested differences between the two groups on important employment-related indicators., Results: People with IDD and autism were less likely than people with IDD alone to have a goal for employment in their individualized service plans and to hold employment in group community settings. There was no statistical difference between the two groups in terms of desire to have a job or employment in individual community settings., Conclusions: Results reinforce the importance of planning for employment if holding employment is a person's aim, regardless of the presence of autism., Competing Interests: Conflict of Interest The authors declare that they have no conflict of interest.

Medicaid Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities (IDD) are vital for supporting people with IDD to live well in their communities, but there are not set standards for monitoring quality outcomes related to HCBS. In this paper, we propose promising practices for improving the quality of HCBS outcome measurement, based both in the literature and our own experience conducting an extensive U.S. state-level study. Specifically, we discuss: (1) using merged administrative datasets, (2) developing high-quality psychometrics that attend to ecological issues in measurement, (3) using advanced statistical analyses, and (4) creating immersive, user-friendly translational dissemination products. We conclude by suggesting what we see as important new frontiers for researchers to consider in order to enhance the quality of HCBS outcome measurement for people with IDD in the future., Competing Interests: Conflict of Interest: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

This study tests an empirically derived model for measuring personal opportunities for people with intellectual and developmental disabilities (IDD) using National Core Indicators In-Person Survey (NCI-IPS) state and national datasets. The four personal opportunities measured, (a) privacy rights, (b) everyday choice, (c) community participation, and (d) expanded friendships, were informed by existing conceptualizations of service as well as NCI-IPS measures. Analyses confirmed the fit of a four-factor model and demonstrated that factors were significantly and positively correlated. To demonstrate the relationships between personal opportunities and personal and environmental characteristics, we estimated a structural equation model that regressed personal opportunities on age, gender, place of residence, and level of intellectual disability. Implications for using personal opportunities for evaluating service quality of IDD systems are discussed.

In this article, we demonstrate the potential of machine learning approaches as inductive analytic tools for expanding our current evidence base for policy making and practice that affects people with intellectual and developmental disabilities (IDD). Using data from the National Core Indicators In-Person Survey (NCI-IPS), a nationally validated annual survey of more than 20,000 nationally representative people with IDD, we fit a series of classification tree and random forest models to predict individuals' employment status and day activity participation as a function of their responses to all other items on the 2017-2018 NCI-IPS. The most accurate model, a random forest classifier, predicted employment outcomes of adults with IDD with an accuracy of 89 percent on the testing sample, and 80 percent on the holdout sample. The most important variable in this prediction was whether or not community employment was a goal in this person's service plan. These results suggest the potential machine learning tools to examine other valued outcomes used in evidence-based policy making to support people with IDD., (©AAIDD.)

Background and Purpose: People with intellectual and developmental disabilities (IDD) often have health and wellness issues that are not as good as people without disabilities. States are required to monitor health and wellness for people with IDD who use many disability services. However, there are few ways to monitor wellness between states or at different points in time. In this study, we share a new model that states may use to monitor wellness of people with IDD., Methods: We used data from a survey called the National Core Indicators (NCI) to develop this model. First, we developed the model using our state's data. Then, after we found a model that worked well, we tested that model using the National Core Indicators from the entire U.S., Results: Our final model worked well in both our state NCI data and the national NCI data. This is important because policies at both levels can affect the services that people with disabilities can use. Our model had three parts: heart health, mental health, and behavioral wellness. These are described more in the paper. We also used statistics to test some factors that might predict outcomes related to heart health, mental health, and behavioral wellness. Age, sex, where someone lives, and level of intellectual disability were all good predictors of all three categories of wellness that we studied., Implications: The model of wellness that we developed worked well but should be tested using data from other individual states. It is very important to know about health and wellness right now since the services people with disabilities can use are changing in many states. We think our model can help planners and advocates understand how services affect wellness in a way that is easy to compare from state to state and at different points in time.

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration approach to offer initial insights about how Medicaid expenditures relate to outcomes using Medicaid claims data, results of the National Core Indicators consumer survey, and data from the Supports Intensity Scale (SIS). Findings suggested that subpopulations of people with IDD who also had high behavioral needs or high medical needs had significantly higher expenditures than individuals with more typical SIS-assessed support needs. Regression analyses suggested mixed outcomes based on the factors we considered, including a finding that people with IDD who lived in sponsored residential care homes were more likely to engage in inclusive activities in the community than those who lived in larger congregate settings, or those who lived in a family home. Results of this pilot, when brought to scale, will be useful in examining the performance of state IDD service systems over time.

National policy and litigation have been a catalyst in many states for expanding personal outcomes for people with intellectual and developmental disabilities (IDD) and have served as an impetus for change in state IDD systems. Although several metrics are used to examine personal outcomes, the National Core Indicators (NCI) In-Person Survey (IPS) is one tool that provides an annual depiction of the lives of people who receive Medicaid Home and Community Based IDD waiver services (HCBS). This article examines whether a validated, three-factor (Privacy Rights, Everyday Choice, and Community Participation) measure of Personal Opportunity, derived from NCI items, functions as predicted across non-equivalent, NCI cohorts ( N =2400) from Virginia in 2017, 2018, and 2019. Multiple-groups confirmatory factor analysis (CFA) was employed to examine the invariance and generalizability of the Personal Opportunity constructs. Results indicated that Privacy Rights, Everyday Choice, and Community Participation measured the same concepts even when time and group varied. Significant improvements in Privacy Rights and Community Participation were observed when comparing latent factor means across years. Findings provide stakeholders with a tool for interpreting personal outcomes in the contexts of policy and practice intended to improve inclusion and quality of life for adults with IDD.

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.

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.

The number of interventions available for children with autism spectrum disorder (ASD) has expanded greatly in recent years, although relatively little is known about the factors that influence family caregivers as they make treatment decisions for their children. This study involved a statewide survey of parents of young children with ASD to examine the relative weights of the factors that influenced their treatment decisions. Results suggested that caregivers rely on their own intuition for much decision making, although selected professionals are also influential. Implications for professionals working with children with ASD and their families are discussed.

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 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.

Background: Immigrant and refugee populations and people with disabilities are known to have inequitable access to a range of health services. Very little study has been undertaken, however, about immigrants who have disabilities and their experience of the American health care system., Research Design: This qualitative study seeks to discover the particular challenges that immigrants with disabilities face when accessing health care, and the facilitating factors that assist them in this process. A complex multicase study design was utilized, and included purposively sampled individuals from 3 different immigrant communities, having an array of developmental disabilities. Interviews and participant observation provided the data that were analyzed in NVivo9 using a conventional content analysis approach., Results: Findings from this study suggest strong resilience among immigrant families with a member with a disability, as they continue to seek help despite experiencing confusion in navigating a complex health care system. Factors challenging access included difficulty finding accurate information on insurance and service providers, troubles with coordinating multiple specialist services, and a lack of cultural competence in all levels of health service provision. Access to health care services was facilitated by linguistically and culturally sensitive practitioners, favorable comparisons to the country or origin, and systems such as schools that helped to coordinate care., Conclusions: Much can be done to integrate and improve health services to immigrants with developmental disabilities. Emerging models such as medical home may assist with coordination, and improvements in communication patterns could help to improve service access and outcomes.

Self-directed programs that allow individuals with intellectual and developmental disabilities to exercise greater control over their finances have become increasingly common in recent years. At the same time, challenges in the recruitment, retention, and training of direct support workers in the field have grown more acute. In this article, the authors investigate the status of the direct support workforce for people using self-directed supports in 1 Midwestern state, based on the results of a statewide survey of service users. Although additional research is needed, the results of this study suggest that people who use self-directed funding options are satisfied with their ability to direct staffing, though challenges remain. Among these challenges, the presence of higher than expected wages but lower than expected benefits provision compared with traditional services may have serious policy and staff retention ramifications that affect the long-term viability of self-directed funding options. In addition, staff training remains a challenge, with service users in this sample reporting low rates of training beyond a general skill set. Implications of these findings are discussed.