Participation in mainstream community groups by older United States adults with intellectual and developmental disabilities: A multiple case study.

Background: Adults with intellectual and developmental disabilities want to be included in all aspects of community life, but social inclusion continues to be very limited.

Method: We used a qualitative multiple case study to describe the experiences and perspectives of four older workers or retirees with intellectual and developmental disabilities aged 45 to 63 who each participated in a different socially inclusive community group.

Results: Three themes emerged: finding a good match; support for participation; and the outcomes of participating in a mainstream community group.

Transparency and translucency indices for 1,525 pictograms from the Aragonese Portal of Augmentative and Alternative Communication.

This study investigated the transparency and translucency of 1,525 pictograms from the Aragonese Portal of Augmentative and Alternative Communication (ARASAAC). A total of 521 participants took part in tasks that involved providing the word that best described the meaning of a pictogram or rating the relationship between a pictogram and a verbal label. This process allowed us to obtain indices of transparency (the quality of pictograms that makes their meaning easily "guessable" in the absence of their referent) and translucency (the degree of perceived relationship between the pictogram and its referent when the latter is present) which were further analyzed to assess their reliability and comparability with similar studies.

Regional differences in autism and intellectual disability risk associated with cesarean section delivery.

Prior epidemiological studies investigating the association between delivery mode (i.e., vaginal birth and cesarean section [C-section]) and autism spectrum disorder (ASD) and intellectual disability (ID) risk have reported mixed findings.

A positive behaviour support practice framework for disability and community services in Australia that prioritises human rights and evidence-based practices.

Purpose: This paper introduces a practice framework for individualised positive behaviour support (PBS). The framework incorporates existing function-based PBS principles and integrates contemporary research and Australian legislation to frame practice elements through a human rights lens. It is designed to support people with disability of varied aetiologies across the lifespan in various settings (e.

Housing and Long-Term Services and Supports for People With Intellectual or Developmental Disabilities From Racially and Culturally Minoritized Communities.

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.

The State of Employment for People With IDD: Implications for Practice, Policy, and Equity.

Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services.

Criminal Justice and People With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal justice system both as victims/survivors and as offenders. The needs and circumstances of individuals from underserved communities have received scant attention in the literature. Stakeholders met online at the 2022 State of the Science Conference on Community Living to discuss criminal justice and to identify goals for research involving people with IDD.

An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.

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.

The design and methodology for a pilot study of home and community-based services outcome measures.

Background: The Research and Training Center on HCBS Outcome Measurement (RTC/OM) developed and piloted measures in six domains to assess the outcomes experienced by HCBS recipients. These measures were based upon the revised National Quality Forum's HCBS Outcome Measurement framework.

Objective: The background and rationale for the pilot study are outlined along with the research design, sampling frame, and psychometric and statistical methods used.

Postschool Goal Expectations for Youth With Intellectual and Developmental Disabilities.

Using National Longitudinal Transition Study 2012 data, this study explored parent and youth expectations in the areas of postsecondary education, employment, independent living, and financial independence. Compared to youth with other disabilities, youth with intellectual and developmental disabilities and their parents had much lower expectations for the four postschool goals, and parent expectations were much lower than youth's own expectations. Also, youth's race, along with their daily living skills and functional abilities, were positively associated with parent and youth expectations in several future goal areas.

Health professionals' education related to people with intellectual and developmental disabilities: A scoping review.

Background: People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system.

Methods: Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population.

Results: Searches found 4948 articles, with 182 included in the final review.

Transcranial direct current stimulation over the left posterior temporal lobe modulates semantic control: Evidence from episodic memory distortions.

Evidence accumulates to show that semantic cognition requires, in addition to semantic representations, control processes that regulate the accessibility and use of semantic knowledge in a task- and time-appropriate fashion. Semantic control has been recently proposed to rely on a distributed network that includes the posterior temporal cortex. Along these lines, recent meta-analyses of neuroimaging data and studies with patients suffering from semantic aphasia have suggested that the left posterior middle temporal gyrus (pMTG) is critically involved whenever situational context must constrain semantic retrieval.

A Meta-Analysis of Treatment for Self-Injurious Behavior in Children and Adolescents With Intellectual and Developmental Disabilities.

Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective interventions, and the impact on quality of life for people and their families is devastating. The current meta-analysis reviews SIB intervention research between 2011 and 2021 using single-case experimental designs with children and youth up to 21 years old and provides a quantitative synthesis of data from high-quality studies including moderator analyses to determine effects of participant and study characteristics on intervention outcomes. Encouraging findings include a high level of effectiveness across studies in the decrease of SIB (Tau- = -0.

Teaching Requesting to Individuals with Rett Syndrome Using Alternative Augmentative Communication (AAC) Through Caregiver Coaching via Telehealth.

Rett syndrome is a severe neurodevelopmental disorder that results in both motor and language skill regression with a wide range of severity in symptom presentation. Communication intervention may be particularly challenging for this population due to the decline in speech, motor skills, and motor planning difficulties that characterize the disorder (Townend et al., 2020), often resulting in the need for augmentative and alternative communication (AAC) technology.

Supporting Employment Consultants to Implement Supported and Customized Employment.

Implementing supported and customized employment in all their components is essential for supporting job seekers with disabilities to achieve their career goals. We asked 42 employment consultants in nine employment programs to respond daily to three quick questions about their employment support activities, for 6 months. Through monthly coaching, we helped the managers of these organizations engage their teams of employment consultants to interpret the data, reflect, set goals, and take action for quality improvement.

Examining Choice and Control for People With IDD Over Time.

Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice.

The Intersection of Systemic, Child, and Evaluation Factors in the Prediction of Autism Special Education Eligibility; Examining the Role of Race and Ethnicity.

Though there is evidence autism identification has been inequitable for populations who are culturally and linguistically minoritized, there is limited research that explains the issue of disproportionality and factors contributing to its occurrence, especially within an educational setting. To explore contributors to racial/ethnic disparities in autism special education eligibility, the current investigation evaluated child and evaluation characteristics as they relate to the absence of autism eligibility. Data were obtained from the Autism and Developmental Disabilities Monitoring (ADDM) Network Study and included children with behavioral characteristics consistent with autism and educational evaluation records.

Predicting self-injurious behavior at age three among infant siblings of children with autism.

Existing research suggests that self-injurious behavior (SIB) is a relatively common interfering behavior that can occur across the lifespan of individuals with autism spectrum disorder (ASD). We previously reported that SIB or proto-injurious SIB at 12 months was related to increased risk of SIB at 24 months among a preschool sample of children with a high familial likelihood for ASD (Dimian et al., 2017).

The Quality of Life Supports Model as a Vehicle for Implementing Rights.

The Quality of Life Supports Model (QOLSM) is emerging as a new framework that is applicable to people with disabilities in general, but specially to people with intellectual and developmental disabilities (IDD). The aim of this conceptual paper is twofold. Firstly, it aims to show the overlap between the QOLSM and the Convention on the Rights of People with Disabilities (CRPD), highlighting how the former can be used to address many of the goals and rights embedded in the latter.

Corrigendum: A person-centered approach to home and community-based services outcome measurement.

[This corrects the article DOI: 10.3389/fresc.2023.

What Factors Explain Family Quality of Life in Neurodegenerative Diseases?

Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

Background: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users.

Methods: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey.

A person-centered approach to home and community-based services outcome measurement.

In the United States, over 2.5 million people with disabilities are recipients of supports through the Center for Medicare and Medicaid Services (CMS) Home and Community-Based Services (HCBS) program. Recent decades have seen a growing focus on providing HCBS in a person-centered manner thereby supporting outcomes that are both important and the person.