Exploring the Congruence of actigraphy and the Pediatric Autism Insomnia rating Scale.

Objective/background: Insomnia is common in children with autism spectrum disorder (ASD). We recently developed and validated the 21-item Pediatric Autism Insomnia Rating Scale (PAIRS). This report explores the associations and agreements between actigraphy and PAIRS.

Research About Us, With Us: An Inclusive Research Case Study.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared.

A secondary analysis examining the influence of emotional support on the mental health of caregivers of children with autism spectrum disorder.

Purpose: The study purpose was to examine the effect of emotional support on the overall mental health and stress for caregivers of children with autism spectrum disorder (ASD).

Methods: A cross-sectional retrospective study using secondary data from the 2016-2019 National Survey of Children's Health was conducted using single variable and multivariable linear regression analyses.

Results: More informal emotional support sources were associated with better overall mental health (β = 0.

Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD.

Aspiring to Disability Consciousness in Health Professions Training.

Lack of disability-competent health care contributes to inequitable health outcomes for the largest minoritized population in the world: persons with disabilities. Health care professionals hold implicit and explicit bias against disabled people and report receiving inadequate disability training. While disability competence establishes a baseline standard of care, health professional educators must prepare a disability conscious workforce by challenging ableist assumptions and promoting holistic understanding of persons with disabilities.

Assessment of Interprofessional Competence of Leadership Education in Neurodevelopmental and Related Disabilities Trainees through a Virtual Standardized Patient Encounter.

Introduction: Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs have an emphasis on developing skills in providing family-centered and interdisciplinary care. Due to Coronavirus pandemic-related restrictions, opportunities for interdisciplinary education were limited for the 2020-2021 LEND Trainee cohort at The Ohio State University Nisonger Center. Standardized Patient (SP) encounters can be a mechanism for instruction and assessment of interprofessional competence.

Qualitative Exploration Toward the Development of a Parent-Rated Scale for Insomnia in Children with Autism Spectrum Disorder.

Toward the development of a new parent-rating for insomnia, this multi-site qualitative study explored sleep problems and related impacts in children with autism spectrum disorder (ASD) and their families. To ensure content validity of the measure, we conducted six focus groups with caregivers (N = 25) of 24 children (age 3 to 18 years) with ASD. Based on parent report, all children had a history of mild or greater insomnia.

The French Version of the DABS: Adaptation Process and Preliminary Field Test.

The aim of this study was to develop a transcultural adaptation of the Diagnostic Adaptive Behavior Scale (DABS) in French and to perform a field evaluation of the adapted version of the tool (DABS-F). Eight experts in intellectual and developmental disabilities (IDD) and two professional translators formed two committees to translate the instrument. Thirty-four independent experts in IDD rated the clarity and relevance of the DABS-F.

Evaluating an informed consent process designed to improve inclusion of adults with intellectual disability in research.

Background: Adults with intellectual disability (ID) are both underrepresented in research and enrolled in studies they may not understand. Instead of facilitating research engagement, the informed consent process often fails to elucidate its essential elements.

Aims: We evaluated whether a novel informed consent process was more effective than current practice at helping adults with ID understand key elements of research.

Putting "ME" into measurement: Adapting self-report health measures for use with individuals with intellectual disability.

Background: Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID.

Aims: This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest).

Italian Diagnostic Adaptive Behavior Scale: Reliability and diagnostic accuracy compared with the Vineland-II.

Background: The Diagnostic Adaptive Behavior Scale (DABS) is a short scale with excellent properties to assess the conceptual, social, and practical adaptive behavior domains for the diagnosis of intellectual disability (ID) in individuals aged 4-21 years.

Aims: Investigate the test-retest and inter-respondent reliability of the Italian adaptation of the DABS, verify its diagnostic accuracy in identifying individuals with ID and excluding individuals with typical development (TD), and compare its psychometric properties to those of the Vineland-II.

Methods: Test-retest reliability: The same respondent completed the Italian DABS for the same assessed person at two separate times (n = 71).

Empirically supported psychological treatments: The challenges of comorbid psychiatric and behavioral disorders in people with intellectual disability.

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability (ID) at all stages of their life. We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population, along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems. We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID.

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.

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.

Caregivers of Children with Autism Spectrum Disorder in Rural Areas: A Literature Review of Mental Health and Social Support.

Problem: Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD.

Getting comfortable with disability: The short- and long-term effects of a clinical encounter.

Background: Physicians report discomfort when interacting with patients with disabilities, which can negatively impact the quality of healthcare they provide.

Objective/hypothesis: An intervention structured around a formative clinical encounter was assessed for its effectiveness in changing comfort towards treating patients with disabilities. It was predicted that this encounter would have a positive short- and long-term impact on medical students.

What should we teach about disability? National consensus on disability competencies for health care education.

Background: Health care providers are unprepared to meet the health needs of patients who have disabilities. Disability training is needed, yet there is little agreement about what should be taught.

Objective: Establish a national consensus on what healthcare providers across disciplines need to know to provide quality care to patients with all types of disabilities (e.

Who thrives as a direct support professional? Personal motivation and resilience in direct support.

Direct support professionals (DSPs) are an essential part of the lives of people with intellectual and developmental disabilities (IDD). High rates of DSP turnover and vacancy have spurred much research into the occupational stress and burnout experienced by DSPs. There are, however, DSPs who remain motivated by and successful in the profession.

The public health response to the COVID-19 pandemic for people with disabilities.

With the rapidly changing landscape of the COVID-19 outbreak, how to best address the needs and continue to protect the health and well-being of people with disabilities (PwDs) is a global public health priority. In this commentary we identify three public health areas of ongoing need and offer possible strategies to address each. These areas include: the types of data that would help clarify risks for PwDs and help assure their safety long term; the prevention, treatment and mitigation measures for PwDs that are needed through the duration of the outbreak; and the issues of equity in access to and quality of medical care for PwDs.

Implementing Living Independent From Tobacco With Dyads of People With Disabilities and Their Caregivers: Successes and Lessons Learned.

People with disabilities have more health complications and higher healthcare utilization related to tobacco use than people without disabilities. Yet, they are less likely to use tobacco cessation resources. Important to meaningful and lasting health behavior change are relationships developed in the home, workplace, and community.

A call to action: Preparing a disability-competent health care workforce.

People with disabilities make up the largest minority population in the country, yet our health care workforce is unprepared to meet their needs. Two initiatives - and the Alliance for Disability in Health Care Education's Disability Competencies and the Resources for Integrated Care Disability-Competent Care model-provide essential tools to build a health care workforce prepared to meet the health needs of people with disabilities. We note gaps in health education and continuing education curricula, document barriers to progress, and demonstrate how the two initiatives offer a clear roadmap to effect systemic change.

What Matters in Population Health and How We Count It Among People With Intellectual and Developmental Disabilities.

This issue, presents an overview of health surveillance research for people with intellectual and developmental disabilities (IDD) in the United States. Although public health now conducts surveillance of people with disabilities broadly defined and compares their health status with that of individuals without disabilities, there are many challenges in conducting health surveillance of people with IDD. Difficulties include how to define cases, how to find cases, and how to obtain accurate information ( Krahn, Fox, Campbell, Ramon, & Jesien, 2010 ).

Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey.

Employment and choice-making for adults with intellectual disability, autism, and down syndrome.

Background: Adults with disabilities are employed at a significantly lower rate than adults without disabilities. Of adults with disabilities in the workforce, more individuals work in a facility setting rather than a community setting, despite efforts to improve community inclusion. Choice-making has been proposed as a predictive factor for employment for individuals with disabilities.