Health and Well-Being at the Transition to Adulthood Among Individuals With Disabilities: An Analysis of the Panel Study of Income Dynamics.

PURPOSE: To describe positive mental health, or "flourishing," and self-reported health trajectories among transition-aged young adults (TAYA) with developmental/learning and physical disabilities over a 12-year period, utilizing a population-based sample. METHODS: This study features a secondary analysis of national data from the Panel Study of Income Dynamics Transition to Adulthood Supplement. The analytic sample included all TAYA with (n = 487) and without (n = 810) disabilities, including developmental/learning disabilities (DD/LD), attention deficit hyperactivity disorder (ADHD), and speech, hearing, and vision impairments who participated in 2017 Transition to Adulthood Supplement data collection (n = 1,297; M age = 24.5, standard deviation = 2.40). We utilized linear mixed modeling to retrospectively describe flourishing and self-reported health trajectories across 12 years among TAYA with and without disabilities between ages 18 to 28, adjusting for demographic and developmental characteristics. RESULTS: Relative to TAYA without disabilities, TAYA with speech [0.10, 0.85] and vision impairments [0.10, 0.92], DD/LD [0.38, 1.11], and ADHD [0.27, 0.97] demonstrated lower flourishing. TAYA with speech [0.07, 0.36] and vision impairments [0.08, 0.38], DD/LD [0.15, 0.411], and ADHD [0.14, 0.93] reported lower health. Relative to TAYA with other disabilities, TAYA with ADHD [0.14, 0.93] and DD/LD [0.01, 0.29] reported lower flourishing and health, respectively. Interaction effects and descriptive analyses revealed distinct patterns of change for TAYA with ADHD. DISCUSSION: TAYA with disabilities report lower flourishing and health, relative to TAYA without disabilities. TAYA with specific disabilities differ in their flourishing and health trajectories. Findings can inform the development of interventions for TAYA with disabilities.

Using a life course health development framework to combat stigma-related health disparities for individuals with intellectual and/or developmental disability (I/DD).

In the U.S., 1 in 6 children has an intellectual and/or developmental disability (I/DD). This population experiences a multitude of negative health outcomes across the life course, relative to the general population. Stigma-the social devaluation of individuals with certain characteristics, identities, or statuses within interpersonal, educational, healthcare, and policy contexts-is a potentially preventable contributor to health disparities. To date, existing approaches for addressing and preventing stigma are limited to discrete and siloed interventions that often fail to address the lifelong, cumulative impacts of the specific types of stigma experienced by the I/DD population. In the current paper, we describe three elements of Life Course Health Development (LCHD)-a novel translational framework that draws on evidence from biology, sociology, epidemiology, and psychology-that healthcare providers can use to prevent stigma-related health disparities and improve outcomes for individuals with I//DDs. We discuss the utility of targeting prevention to sensitive periods; prioritizing interventions for the most damaging types of stigmas; and leveraging supports from multiple service systems and sectors. By incorporating evidence from life course science into efforts to address stigma-related health disparities, providers can more effectively and strategically prevent and combat stigma-related health disparities for the I/DD population in childhood and across the life course.

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

The role of social capital in resilience among adolescents with adverse family environments.

The Life Course Health Development (LCHD) framework underscores the profound impact of stressors during critical developmental phases on an individual's lifelong health, including their mental well-being. Among these developmental transitions, adolescence emerges as a pivotal life stage where an adolescent's mental health trajectory is significantly influenced by the various risk and promotive factors embedded within their social ecosystem. Adolescents from adverse family environments (AFEs) face heightened susceptibility to mental health challenges. Nevertheless, there are opportunities within the adolescent's environment to foster resilience. In this paper, we employ an interdisciplinary approach grounded in the LCHD framework to assess existing research pertaining to resilience, social capital, and health development. Furthermore, we aim to provide actionable recommendations tailored to healthcare providers, with a specific emphasis on strategies to augment mental health outcomes among adolescent populations, particularly those experiencing AFEs.

Implementation of a Minimal Sedation Protocol for Patients With Developmental Disabilities and Needle Phobia.

Objective Patients with intellectual and developmental disabilities (IDD) experience needle phobia at greater rates than individuals in the general population. Needle phobia deters patients with IDD from receiving routine medical procedures, which impacts their physical health outcomes. The aim of this quality improvement study was to assess the feasibility of a minimal sedation protocol in an outpatient care setting for patients with IDD and needle phobia. Methods The sample included 18 patients characterized as having a diagnosis of IDD only or IDD and needle phobia compared to patients with only a diagnosis of needle phobia. Reasons for referral to intervention included routine lab work, therapeutic drug monitoring, and routine vaccination. The minimal sedation intervention involved intranasal administration of a benzodiazepine (midazolam) by a registered nurse. Outcomes of interest were administration of the sedation and administration of medical orders. Results Nearly a third of patients were children (33.3%, n=6), and 39% of patients were female (n=7). Individuals with IDD (including those both with and without needle phobias) comprised 72.2% of patients (n=13). Half of intervention encounters were successful in both administering the sedation and performing the medical orders (n=9). Among individuals with IDD, 38.4% successfully completed the intervention (n=5). Conclusion This pilot study assessed the feasibility of implementing a minimal sedation protocol in primary care outpatient care settings. The preliminary results suggest that the minimal sedation protocol may improve the uptake of needle-related medical procedures for patients with IDD and/or needle phobia. The minimal sedation protocol should be studied in a larger sample and among multiple outpatient settings to establish effectiveness of the intervention.

The Needle Anxiety Program: A Patient-Centered Initiative for Individuals With Developmental Disabilities.

Objective To describe the development process of a patient-centered initiative focused on improving primary care health outcomes of patients with intellectual and developmental disabilities (IDD) and needle-related anxiety using evidence-based practices and novel approaches that can be implemented in outpatient settings. The overall outcome of the program is to increase vaccine uptake and accessibility in the IDD population as well as improve needle-related procedures in primary care settings to be more humane and effective. Methods The development process occurred in the context of a large healthcare system serving a diverse patient population in the U.S. and was led by an expert committee made of an multidisciplinary team of physicians, psychologists, ambulatory and clinic nurses, pharmacists, and anesthesiologists committed to promoting quality healthcare for the IDD population. Committee members were recruited within the healthcare system based on their relevant expertise. The methodology included an iterative and collaborative process that took place over three development phases: ideation and design, literature review and synthesis, and expert engagement. The ideation and design phase included a series of planning meetings among the expert committee, in which committee members identified preliminary concerns based on their expertise in the field and background knowledge on the current procedures related to improving routine care for individuals with IDD and/or needle-related anxiety. The literature review and synthesis phase led to the development of an annotated bibliography of research and clinical guidelines that synthesized findings on needle anxiety in clinical care. The expert engagement phase included all Committee members meeting for a final discussion to establish a tiered approach to utilizing evidence-based strategies that could be implemented across clinics within the healthcare system.  Results The multidisciplinary team of experts developed a three-tier system, deployed sequentially as needed. The first tier focuses on training nurses in evidence-based behavioral modification strategies to implement as standard of care. The second tier uses the addition of a distraction device and topical analgesic to reduce anxiety in patients with slightly elevated procedural anxiety. The third tier involves a novel minimal sedation protocol using intranasal midazolam for patients with needle phobia that can be administered in an outpatient setting. Conclusion The Needle Anxiety Program eases the administration of needle-related medical procedures in the primary care setting for patients with IDD and needle-related anxiety. The use of evidence-based practices and a novel minimal sedation protocol for individuals with needle phobia assists in the completion of routine healthcare procedures, such as vaccinations and phlebotomy, in a patient-preferred setting. The purpose of delineating needle-related processes and procedures through the Needle Anxiety Program is to reduce health disparities for patients with IDD and promote uptake of the Needle Anxiety Program in similar healthcare settings.

Developing "Adulting for Health": Investigating the Health Needs of Neurodivergent Emerging Adults.

INTRODUCTION: Neurodivergent emerging adults - defined as individuals between the ages of 18 and 30 with intellectual and/or developmental disabilities (e.g., attention-deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, developmental delays, with or without intellectual impairment) and physical and/or sensory disabilities (e.g., blindness or hearing impairment) - experience poor mental and physical health outcomes. Existing interventions are insufficient because they are not based on the self-reported and developmental needs of this population. METHODS: The current study is an exploratory pilot study that features a multidimensional health-based needs assessment of self-identified neurodivergent emerging adults with ADHD, learning disabilities, autism, and other conditions, mean (M) age = 22.8; standard deviation (SD) = 3.4; n = 26). This research used validated measures. The assessment - administered via Qualtrics to the participants in two sites - included the Mental Health Continuum-Short Form, Kessler-6 Psychological Distress Scale, Project EAT (Eating and Activity over Time)-IV (with the intuitive eating, weight-related control, emotional eating, and physical activity subscales), and an original health-focused needs assessment developed by interdisciplinary healthcare professionals and neurodivergent individuals. RESULTS: The sample reported low positive mental health, with only 3% reportedly "flourishing." The sample also reported high psychological distress according to clinical and psychometric cut-off scores; varied intuitive eating and weight-control behaviors and attitudes; and distinct needs related to integrating the principles of health promotion into daily life, navigating the healthcare system, and learning from healthcare professionals. Based on these findings, we present an initial conceptualization of "Adulting for Health," a potential virtual education program to promote health-related knowledge and capacities for this population. CONCLUSIONS: The results from this exploratory pilot study can be incorporated into existing programs and spur efforts to develop and test new interventions that can ameliorate health disparities for neurodivergent emerging adults.

Facilitators and Barriers to Care for Patients with Disabilities in Primary Pediatrics.

Nearly 20% of children in the United States have special health care needs, and they often experience disparities in health outcomes. This article reviews barriers to and facilitators of primary pediatric care for children within four defined categories of disability: (1) physical disabilities, both temporary and permanent; (2) chronic conditions requiring accommodations, including mental health conditions; (3) sensory disabilities and conditions; and (4) cognitive, educational, neurodevelopmental, and social disabilities. Primary care facilitators include interventions for both providers and patients that focus on time as a valued resource, provide psychosocial support, coordinate interdisciplinary teams of care, and provide training for providers. Barriers include exclusion of patients with disabilities from research trials and gaps in educational reform regarding ableism and hidden disabilities. Identified facilitators should be implemented on a larger scale, and barriers need to be addressed further so we may better support children with disabilities. [Pediatr Ann. 2022;51(6):e243-e253.].

Mindfulness and Wellbeing Among College Students During the COVID-19 Pandemic: A Qualitative Analysis of Emergent Themes and Concerns.

Emerging adulthood (ages of 18-30 years) is a critical developmental period characterized by mental health challenges, particularly for college students who experience distinct mental health issues. Mindfulness-based approaches have been associated with mental health benefits. This study aimed to assess the mental health and wellbeing of college students with qualitative data obtained via their participation in a mindfulness exercise. We analyzed the sentiments and concerns of college students nearly a year into the coronavirus disease 2019 (COVID-19) pandemic. The results led to the development of four major themes: a source code of the COVID-19 pandemic, assessments of mindfulness and wellbeing, emergent concerns, and coping strategies. The findings from this paper can inform combined internal medicine and pediatrics (Med-Peds) providers' efforts to improve the mental and physical health outcomes among emerging adults.

The Prevalence and Correlates of Involvement in the Criminal Justice System Among Youth on the Autism Spectrum.

This study examined the prevalence and correlates of involvement in the criminal justice system among a nationally representative sample of youth with autism. We examined whether youth had been stopped and questioned by police or arrested at 14-15 years old and 21-22 years old. By age 21, approximately 20% of youth with autism had been stopped and questioned by police and nearly 5% had been arrested. Female youth were less likely to be involved in the criminal justice system, whereas youth displaying externalizing behaviors were more likely to be involved in the criminal justice system. Further research is needed to investigate factors associated with involvement in the criminal justice system among youth with autism and to implement prevention strategies.

Characteristics of Two-Year College Students on the Autism Spectrum and Their Support Services Experiences.

Approximately 80% of college-going youth with autism in the US attend a 2-year college at some point. These community-based, universally accessible institutions offer both academic and vocational courses and have experience in teaching diverse learners. This study used nationally representative survey data from the National Longitudinal Transition Study-2 to describe the characteristics and services experiences of adults with autism who attended postsecondary education after high school, focusing on those who attended a 2-year college. Over 60% of those who attended 2-year colleges had little to no trouble conversing or performing functional skills like counting change during high school, and extracurricular participation was common (93.8%). Most 2-year college attenders (85.7%) were able to navigate to places outside the home versus 43.9% of those with no postsecondary education. Over half took vocational courses at 2-year colleges, while one-quarter pursued academic study. Less than half (48.6%) of those who disclosed their disability to the school reported receiving services, accommodations, or other help. Most (87.3%) felt they received enough help, but fewer (68.0%) felt the services they received were useful. Future research should delineate specific needs of students with autism in 2-year college settings and identify what supports are needed to improve persistence and completion rates.