Intellectual And Developmental Disabilities Research Articles

Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Aging Well Together: Promoting Brain Health for Aging Individuals with IDD and Their Families

Adults with intellectual and developmental disabilities (IDD) have been historically excluded from participating in aging-focused research, continue to experience barriers accessing appropriate health care, and encounter distinct challenges as they age compared to people without IDD. These challenges and their effects often extend to their immediate support system, including family caregivers, including parents, siblings, and other kin. Family caregivers, often in the role of 'perpetual caregivers,' can struggle to support aging adults with IDD as they also concurrently experience the effects of their own aging, potentially hindering their ability to provide lifelong care. As parents age, the burden of care may shift to others within this support network such as siblings who, due to various constraints (e.g., geographic location, personal obligations, and financial restrictions) can also experience challenging caregiving responsibilities. Research on the mental health of family caregivers has predominantly focused either on the impact of caregiving among parents of people with IDD (and to a lesser extent on siblings) or on late-life caregivers of aging adults without IDD. This leaves a significant gap in understanding how to support caregivers during mid-late adulthood as their family member with IDD ages or as they themselves undergo age-related changes.    
 In this paper, we provide a brief overview of research on family caregiving of older adults with IDD, followed by a description of a national effort, The Brain Health-IDD initiative. This initiative aims to develop strategies that will support the promotion of brain health in aging adults with IDD and their family caregivers. As part of this effort, family caregivers, both siblings and parents of adults with IDD are working together with researchers and clinicians to co-design, co-deliver and evaluate a virtual education program for families.  
  The paper concludes by reflecting on the program's importance from the perspective of sibling and parent caregivers. This inclusive approach emphasizes the broader responsibility of supporting families navigating the challenges of disability and aging in mid-late adulthood, highlighting the need for support and awareness across all levels of care.    
  

Qualitative Evaluation of an Interactive Art Intervention to Improve Resident Comfort with Working with Adults with Intellectual and Developmental Disabilities (IDD) (P4-7.005)

Qualitative Evaluation of an Interactive Art Intervention to Improve Resident Comfort with Working with Adults with Intellectual and Developmental Disabilities (IDD) (P4-7.005)

Examining a leadership development initiative for college students with intellectual and developmental disability: A brief report

BACKGROUND: The number of inclusive college programs for students with intellectual and developmental disability (IDD) in the United States has steadily increased in recent years. As access to college becomes a more realistic prospect for people with IDD, there is a pressing need to examine the offerings and impacts of these programs critically. OBJECTIVE: One potential offering of inclusive college programs that has not been given much attention is opportunities for student leadership development (LD). The purpose of this brief report was to evaluate the perspectives of staff members in a program geared towards providing a paid LD opportunity to students with IDD in an inclusive college program in the southeastern United States. METHODS : Semi-structured interviews were conducted with ten student-employees staffing this LD opportunity and constant comparative analysis was employed to organize interview content by themes. RESULTS: Four primary themes arose as a result of the analytic process: character development, communication, opportunities for leading and mentoring others, strategic reflection, and individual empowerment. Each is explored in summation and through exemplary quotes from participants. CONCLUSION: The findings of this study provide important implications for professionals and future research to support maximizing the positive impact of these programs on the lives of students with IDD.

Exploring the Personal Identity of College Students With Intellectual and Developmental Disabilities

Emerging adulthood is a period of human development ripe for personal identity exploration and a college campus can be a conducive environment for this to take place. Historically, many transition-age adults with intellectual and developmental disabilities (IDD) have been denied access to college, but with the rise in inclusive postsecondary education (IPSE) programs across the country, that is changing. This study uses a combination of semi-structured interviews and photo elicitation discussions with 11 emerging adults enrolled in a southeastern IPSE program to better understand how these individuals understand and express their personal identity as well as the contextual factors contributing to their experiences with personal identity. Using thematic analysis, we uncovered seven salient themes across the data, including a theme related to the complicated nature of the participants’ disability identity.

Natural supports in competitive integrated employment: A scoping review

BACKGROUND: Competitive integrated employment (CIE) improves the quality of life for individuals with intellectual and developmental disabilities (IDD). Individuals with IDD may need additional support in the workplace. Natural supports has been studied as an intervention to provide support and increase vocational and social skills for individuals with IDD in the workplace. OBJECTIVE: The purpose of this article is to review the existing literature conducted on implementing natural supports in CIE settings to build vocational or social skills for individuals with IDD. METHOD: We followed the PRISMA-ScR process to identify articles across seven databases and coded information related to demographics, methodology, and outcomes. RESULTS: Seventeen articles were identified between 1985 –2024 that focused on implementing natural supports in CIE settings for individuals with IDD. Studies addressed vocational and social skills and broader vocational topics such as wages, hours worked, and inclusion in the workplace. CONCLUSION: Employees with IDD improved their engagement in vocational tasks, increased their social interactions with coworkers, and improved their quality of life through increased wages, hours worked, and job tenure. Additional research is warranted to provide further evidence on the impact of natural supports in the workplace for employees with and without IDD.

Ventilation during COVID-19 in a school for students with intellectual and developmental disabilities (IDD).

This study examined the correlation of classroom ventilation (air exchanges per hour (ACH)) and exposure to CO2 ≥1,000 ppm with the incidence of SARS-CoV-2 over a 20-month period in a specialized school for students with intellectual and developmental disabilities (IDD). These students were at a higher risk of respiratory infection from SARS-CoV-2 due to challenges in tolerating mitigation measures (e.g. masking). One in-school measure proposed to help mitigate the risk of SARS-CoV-2 infection in schools is increased ventilation. We established a community-engaged research partnership between the University of Rochester and the Mary Cariola Center school for students with IDD. Ambient CO2 levels were measured in 100 school rooms, and air changes per hour (ACH) were calculated. The number of SARS-CoV-2 cases for each room was collected over 20 months. 97% of rooms had an estimated ACH ≤4.0, with 7% having CO2 levels ≥2,000 ppm for up to 3 hours per school day. A statistically significant correlation was found between the time that a room had CO2 levels ≥1,000 ppm and SARS-CoV-2 PCR tests normalized to room occupancy, accounting for 43% of the variance. No statistically significant correlation was found for room ACH and per-room SARS-CoV-2 cases. Rooms with ventilation systems using MERV-13 filters had lower SARS-CoV-2-positive PCR counts. These findings led to ongoing efforts to upgrade the ventilation systems in this community-engaged research project. There was a statistically significant correlation between the total time of room CO2 concentrations ≥1,000 and SARS-CoV-2 cases in an IDD school. Merv-13 filters appear to decrease the incidence of SARS-CoV-2 infection. This research partnership identified areas for improving in-school ventilation.

Covid-19 patterns among adults with intellectual and developmental disability and the general population in New York state during the first year of the pandemic

BackgroundPeople with intellectual and developmental disabilities (IDD) in the US, especially those living in group homes, experienced comparatively higher Covid-19 case/case fatality rates than the general population during the first year of the pandemic. There is no information about the patterns of case/case fatality rates during this time. ObjectiveThis study compared Covid-19 case/case fatality rates among people with IDD living in residential group homes to the general population across the first year of the pandemic in New York State (NYS). MethodsCovid-19 positive cases and deaths collected from New York Disability Advocates (NYDA), a coalition of organizations serving individuals with IDD, was compared to data for the NYS general population from the first pandemic year. Case rates/100,000 and case fatality rates were calculated for the study period. Joinpoint Trend Analysis Software was used to analyze patterns in weekly case/case fatality rates. ResultsCase fatality rates for people with IDD were higher than for the overall state population throughout the pandemic's first year. Case rates were higher among people with IDD across most of this year. Although the patterns in rates were similar, there was a sharp increase in cases for those with IDD during Fall 2020 beginning eight weeks before the general NYS population and a significant decrease in fatalities in late December 2020 into January 2021. ConclusionsConsistently higher case fatality rates and significant differences in case/case fatality rates for people with IDD living in group homes require further consideration. Planning for future emergencies will require an enhanced federal/state understanding of the needs of people with IDD and a responsive surveillance system.

Self-Determination Interventions for Students with Intellectual and Developmental Disabilities Transitioning to Postsecondary Education: A Scoping Review

Students with intellectual and developmental disabilities (IDDs) need a myriad of independent living skills to seamlessly transition to postsecondary education. One of these skills is self-determination. Self-determination is deemed as a combination of knowledge and skills that enables a person to become autonomous. So, the purpose of this scoping review was to explore the interventions that promote self-determination in students with IDDs as they transition to postsecondary education in USA. Arksey’s and O’Malley’s framework guided this scoping review paper. An electronic search was conducted using IU OneSearch. The search was restricted to peer-reviewed studies, books, and eBooks published in English language between 2010 to 2022. Studies were screened at the title and abstract levels, and at full-text level by the author. In total, two studies met the inclusion criteria and were included in this review. Findings showed that curriculum-based and community-based interventions had remarkable potentials in promoting self-determination in students with IDDs who were transitioning to postsecondary education. Implications for research include developing and implementing more curriculum-based and community-based interventions; measuring treatment integrity through checklists; describing implementation procedures to allow for replication studies to be conducted; and utilizing a mixed-methods research design in intervention studies.

Evaluation of a Model of Transition-Related Instruction to Enhance Self-Directed Career Development of Students with Intellectual and Developmental Disabilities

This study was conducted to investigate the effectiveness of a transition-related instructional model (TRIO) for students with intellectual and developmental disabilities (IDD). The model promoted self-directed problem-solving concerning transition-related goals and career development. The TRIO model contained three instructional phases for problem-solving. Throughout the three phases, three essential elements were determined in the transition curriculum for the self-directed learning process, including transition-specific curriculum, self-determination instructions, and the circle of support. 79 junior high school students participated in this study doing group assignments. They were split into the experimental group (n = 36) with the TRIO instruction and the control group (n = 43). Scores on the Career Planning and Development Questionnaire before and after the intervention were analyzed. The results indicated that the experimental group showed significantly higher scores than the control group on the overall career competency and each sub-domain, and the patterns of score change were different between the experimental and control groups when applying the hierarchical linear model (HLM).

Difficult ‘By Design’: Viewpoints of Crown Attorneys and Defense Counsel Working With Youth With Intellectual and Developmental Disabilities in the Youth Justice System

Despite the overrepresentation of youth with intellectual and developmental disabilities (IDD) in the youth criminal justice system, little is known about their experiences. Drawing on interviews with defense counsel and crown attorneys, we examine how Canada’s Youth Criminal Justice Act (YCJA) guides the work of justice professionals and the extent to which this legislation responds to youth with IDD. Findings provide insight into some of the realities and challenges justice professionals face in their role. We consider how gaps between the YCJA and its application in practice may be addressed for youth with IDD in the youth criminal justice system.

Physical Activity, Quality of Live and Well-Being in Individuals with Intellectual and Developmental Disability.

The practice of physical activity, exercise and sport has many benefits for the general population, but studies on the population with intellectual and developmental disabilities (IDD) are scarce and inconclusive. The aim of this systematic review is to analyze the state of the art on the role of physical activity, exercise and sport in the quality of life and well-being of people with IDD, seeking to understand the current panorama in this area and provide answers to these questions. The research was carried out between July and October 2023 using three databases: PubMed, Web of Science and Scopus. Fifteen articles met the eligibility criteria for this study, and these were methodologically assessed using the Downs and Black scale (1998). Higher values were identified in the total quality of life score and some domains of this variable (e.g., personal development, physical well-being and emotional well-being), in satisfaction with life and in the perception of well-being in individuals with IDD who have enjoyed or are involved in physical activity, physical exercise and/or sports programs. Thus, according to the studies included in this systematic review, we can conclude that the practice of physical activity, physical exercise and sport seems to contribute to improving the quality of life and well-being of people with IDD. Despite the growing research interest in this area, there is still a notable lack of studies exploring the impact of these programs, especially sports-based programs, on quality of life and well-being variables in the population under study.

Synthesis: International perspectives on healthcare for people with intellectual and developmental disabilities

AbstractBackgroundThe organization of healthcare for people with intellectual and developmental disabilities (IDD) varies across countries. Each country has developed unique practices embedded in their historical and organizational context. Understanding and sharing these practices across borders facilitates mutual understanding about healthcare needs of people with IDD and facilitates the adoption of effective strategies in other countries.AimTo provide a synthesis across the country‐specific papers in the JPPID special edition and thereby identify underlying trends, challenges, and best practices in healthcare for people with IDD.MethodsThe papers in this special edition, which describe the organization of healthcare for people with IDD in 13 countries, were qualitatively analyzed using thematic content analysis, focusing on general characteristics, history, and context, organization of healthcare for people with IDD, challenges, and best practices.ResultsEach paper described a specific national history of evolution of healthcare for people with IDD, but our analysis showed that countries face similar challenges in healthcare for people with IDD. These challenges cover (1) access to healthcare, (2) quality of healthcare, (3) implementation, and (4) visibility of people with IDD. Consequently, people with IDD continue to face significant health disparities. Several best practices have been developed, ranging from making mainstream healthcare more accessible and suitable to providing specialized services, and advocating and raising awareness.ConclusionsThis synthesis is the first paper to include perspectives on healthcare for people with IDD across 13 countries. We identified that, despite differences in context, countries face similar challenges in improving healthcare for people with IDD. International collaboration and networking can provide essential tools in reducing health disparities that people with IDD face, starting with the challenges identified in this synthesis. This will require effort to especially include low‐ and middle‐income countries.

Perceived barriers and facilitators to infection prevention and control in Dutch residential care facilities for people with intellectual and developmental disabilities: a cross-sectional study

BackgroundAdequate implementation of infection prevention and control (IPC) in residential care facilities (RCFs) for people with intellectual and developmental disabilities (IDDs) is crucial to safeguarding this vulnerable population. Studies in this field are scarce. This study aimed to identify perceived barriers to and facilitators of IPC among professionals working in these settings, along with recommendations to improve IPC, to inform the development of targeted interventions.MethodsWe administered an online questionnaire to 319 professionals from 16 Dutch RCFs for people with IDDs (March 2021-March 2022). Perceived multilevel barriers and facilitators (guideline, client, interpersonal, organisational, care sector, and policy level) were measured on a 5-point Likert scale (totally disagree-totally agree). Recommendations were assessed using a 5-point Likert scale (not at all helpful-extremely helpful), supplemented by an open-ended question. Barriers, facilitators, and recommendations were analysed by descriptive statistics. Open answers to recommendations were analysed through thematic coding.ResultsBarriers to IPC implementation included the client group (e.g., lack of hygiene awareness) (63%), competing values between IPC and the home-like environment (42%), high work pressure (39%), and the overwhelming quantity of IPC guidelines/protocols (33%). Facilitators included perceived social support on IPC between professionals and from supervisors (90% and 80%, respectively), procedural clarity of IPC guidelines/protocols (83%), and the sense of urgency for IPC in the organisation (74%). Main recommendations included the implementation of clear IPC policies and regulations (86%), the development of a practical IPC guideline (84%), and the introduction of structural IPC education and training programmes (for new staff members) (85%). Professionals also emphasised the need for IPC improvement efforts to be tailored to the local care context, and to involve clients and their relatives.ConclusionsTo improve IPC in disability care settings, multifaceted strategies should be adopted. Initial efforts should involve clients (and relatives), develop a practical and context-specific IPC guideline, encourage social support among colleagues through interprofessional coaching, reduce workload, and foster an IPC culture including shared responsibility within the organisation.

Is learning analytics applicable and applied to education of students with intellectual/developmental disabilities? A systematic literature review

Our contemporary society demands highly qualified professionals in all sectors, and education serves as the keystone for achieving this goal. While educational institutions are diligently preparing their students to thrive in this context, emphasizing inclusivity across all demographics is crucial. An essential group in this regard comprises students with Intellectual and Developmental Disabilities (IDDs), who require tailored tasks, content, and activities to facilitate their learning. A crucial consideration is facilitating their success in education, and in this context, Learning Analytics (LA) emerges as a potential solution. LA aims to optimize students' learning experiences by gathering and analyzing their data in order to facilitate better interventions.However, it is imperative to ascertain whether LA has been effectively utilized with IDD students. To address this issue, this research project proposes a Systematic Literature Review, considering six of the most relevant scientific works sources, and identifying 364 studies. These studies underwent meticulous filtering and evaluation, resulting in 28 records which specifically address the use of LA with IDD students. Insights gained from the review indicate that the application of LA in the learning experiences of IDD students is viable. However, it necessitates careful consideration of factors such as students’ difficulties and special characteristics, learning contexts, and the available resources to construct effective learning interventions.

Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.

An observational investigation of unemployment, underemployment, and competitive integrated employment of people with intellectual and developmental disabilities in 2021-2022

BackgroundEmployment is an important component of community living, and a precursor to economic stability and independence. Despite this, research consistently demonstrates people with intellectual and developmental disabilities (IDD) have low rates of community-based employment. However, little research has been conducted to quantify competitive integrated employment, and which individuals have better employment outcomes as it relates to competitive integrated employment. ObjectiveThis study aims to explore the ways in which key service-related and demographic characteristics of individuals with IDD are associated with participation in competitive integrated employment. MethodsWe used the 2021–2022 National Core Indicators Intellectual and Developmental Disabilities In-Person Survey dataset. We conducted bivariate and multivariate analyses, using chi-square and generalized linear models, to examine the cross-sectional relationship between employment and demographic and service-related characteristics for 4629 individuals with IDD. ResultsOverall, 42% of the sample was unemployed but wanted a job, while 39% were underemployed and just 21% have competitive integrated employment. Several demographic and service-related characteristics were significantly associated with employment. After controlling for demographic and service-related correlates of employment, having an employment-related goal in one's service plan was associated with 4.5 (95% CI: 3.6–5.5) times higher odds of competitive integrated employment relative to unemployment. ConclusionsThis study underscores the value of person-centered planning for improved employment outcomes. Further research is needed to fully understand potential inequities in employment and system-level factors that are associated with competitive, integrated employment, as well as solutions to improve access to customized individual employment supports for all people with IDD.

Healthcare for people with intellectual and developmental disabilities in Italy

AbstractThe Italian healthcare system is public and freely available to the population. With a few exceptions, there are no distinctions between the healthcare services and practices (e.g., primary care) designed for the general population and those for individuals with intellectual and developmental disabilities (IDD). Prevalence data on adults with IDD are lacking and most disability policies and resources are designed for people with disabilities broadly defined, without specification based on disability type or severity level. Recent legislation provides specific supports for individuals with severe disabilities or autism spectrum disorder. This paper describes the legislation and health policies developed for people with disabilities, the organization of the Italian healthcare system, and the organization of disability support services and healthcare services. Strengths (e.g., availability of many financial resources, adoption of biopsychosocial approach to disability, presence of innovative projects to address the healthcare needs of people with IDD) and weaknesses (e.g., lack of distinction among disability types, territorial differences, lack of disability training of healthcare providers) of the current healthcare practices are reported and discussed.

Understanding COVID-19 infection among people with intellectual and developmental disabilities using machine learning

BackgroundPeople with intellectual and developmental disabilities (IDD) were disproportionately affected by the COVID-19 pandemic. Predicting COVID-19 infection has been difficult. ObjectiveWe 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. MethodsWe 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. ResultsOur 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. ConclusionsResults 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.

The Power of Partnerships to Identify and Address Mental Health Concerns Experienced by Adults With Intellectual and Developmental Disabilities.

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.