Interaction of Heavy Metal Lead with Gut Microbiota: Implications for Autism Spectrum Disorder (preprint)

Autism Spectrum Disorder (ASD), a neurodevelopmental disorder characterized by persistent deficits in social interaction and communication manifests in early childhood and is followed by restricted and stereotyped behaviors, interests or activities in adolescence and adulthood (DSM-V). Although genetics and environmental factors have been implicated, the exact causes of ASD have yet to be fully characterized. New evidence suggests that dysbiosis or perturbation in gut microbiota (GM) and exposure to lead (Pb) may play important roles in ASD etiology. Pb is a toxic heavy metal that has been linked to a wide range of negative health outcomes including anemia, encephalopathy, gastroenteric diseases and more importantly cognitive and behavioral problems inherent to ASD. Pb exposure can disrupt GM, which is essential for maintaining overall health. GM, consisting of trillions of microorganisms, has been shown to play a crucial role in the development of various physiological and psychological functions. GM interacts with the brain in a bidirectional manner referred to as “Gut-Brain Axis (GBA).” In this review, following a general overview of ASD and GM, the interaction of Pb with GM in the context of ASD is emphasized. Potential exploitation of this interaction for therapeutic purposes is also touched upon.

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

Background: 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 that is suspected to help mitigate the risk of SARS-CoV-2 infection in schools is classroom ventilation. Methods: 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 rooms in the school, and air changes per hour (ACH) were calculated. The number of SARS-CoV-2 cases for each room was collected over 20 months. Results: 97% of rooms had an estimated ACH [≤]4.0, with 7% having CO2 levels [≥]1,000 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 per-room SARS-CoV-2 PCR confirmed cases, accounting for 21% of the variance. No statistically significant correlation was found for room ACH and per-room SARS-CoV-2 cases. These findings led to ongoing efforts to upgrade the ventilation systems in this community engaged research project. Conclusions: There was a statistically significant correlation between the total time of room CO2 levels [≥]1,000 PPM during the school day and SARS-CoV-2 cases in that room in an IDD school. This research partnership identified areas for improving in-school ventilation.

Voluntary Running Improves Behavioral and Structural Abnormalities in a Mouse Model of CDKL5 Deficiency Disorder (preprint)

Cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) is a rare neurodevelopmental disease caused by mutations in the X-linked CDKL5 gene. CDD is characterized by a broad spectrum of clinical manifestations, including early-onset refractory epileptic seizures, intellectual disability, hypotonia, visual disturbances, and autism-like features. The Cdkl5 knockout (KO) mouse recapitulates several features of CDD, including autistic-like behavior, impaired learning and memory, and motor stereotypies. These behavioral alterations are accompanied by diminished neuronal maturation and survival, reduced dendritic branching and spine maturation, and marked microglia activation. There is currently no cure or effective treatment to ameliorate the symptoms of the disease. Aerobic exercise is known to exert multiple beneficial effects in the brain, not only by increasing neurogenesis, but also by improving motor and cognitive tasks. To date, no studies have analyzed the effect of physical exercise on the phenotype of a CDD mouse model. In view of the positive effects of voluntary running on the brain of mouse models of various human neurodevelopmental disorders, we sought to determine whether voluntary daily running, sustained over a month, could improve brain development and behavioral defects in Cdkl5 KO mice. Our study showed that long-term voluntary running improved hyperlocomotion and impulsivity behaviors, and memory performance of Cdkl5 KO mice. This is correlated with increased hippocampal neurogenesis, neuronal survival, spine maturation, and inhibition of microglia activation. These behavioral and structural improvements were associated with increased BDNF levels. Given the positive effects of BDNF on brain development and function, the present findings support the positive benefits of exercise as an adjuvant therapy for CDD.

The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19.

Direct support professionals (DSPs) and frontline supervisors (FLSs) have critical roles in home and community-based services for people with intellectual and developmental disabilities. Low wages and high levels of responsibility created a long-term crisis in recruitment and retention and are exacerbated by the COVID-19 pandemic. A national sample of DSPs and FLSs were compared on demographics and work-related circumstances using data from the third Direct Support Workforce COVID-19 Survey. Significant differences were found in demographics, hours worked, wages, wage augmentations, and quality of work-life. Policy recommendations to address the worsening workforce crisis are provided.

Promoting Resilience in Direct Support Professionals of Adults With Intellectual and Developmental Disabilities: A Qualitative Descriptive Study.

The direct support professional (DSP) workforce shortage crisis has reached untenable levels during the COVID-19 pandemic as DSPs rapidly exit the workforce. To gain a better understanding of factors that contribute to DSP resilience during stressful and challenging times, we interviewed 10 DSPs identified by colleagues as resilient to elicit strategies to promote DSP resilience. Our content analysis revealed nine distinct strategies: (a) communication; (b) self-worth and recognition; (c) authentic, equitable relationships; (d) embracing change and learning; (e) establishing and maintaining boundaries; (f) cultivating an intentional mindset; (g) self-care; (h) spirituality/"the bigger picture"; and (i) a daily practice of humor and fun.

Vein of Galen Malformations in adults.

OBJECTIVE: Vein of Galen Malformations (VoGM) are rare vascular malformations, typically seen in pediatric age groups. Even more rarely, VoGM's may be seen later in adulthood. In this case report and systematic review, we provide a thorough description of the current literature as well as provide a case example exploring the diagnosis, imaging, treatment, and management of VoGM in adults. METHODS: In accordance with PRISMA guidelines, we performed a systematic literature search for all relevant cases and case series of VoGM in adult patients. The reference list of all articles were reviewed for additional relevant cases. Articles were included if they described a VoGM of a patient over the age of 18 years old and published in English. 149 articles were originally identified and 26 described cases met our inclusion criteria. RESULTS: In our literature review we found 26 patients that met our inclusion criteria. We found 14 male patients and 12 female patients. The mean age at presentation was 37.2 years (median=34 years, SD= 13.6 years). The most common presenting symptoms of patient were headache (n = 9), seizure (n = 6), and vomiting (n = 4). Of the 12 cases which clearly reported the subtype of VoGM, the choroidal type was more frequently seen (n = 10) compared to the mural type (n = 2). In 3 patients, the VoGM was thrombosed at time of diagnosis. Of the 26 patients, endovascular treatment was performed most frequently (n = 8) but some received microsurgical treatment (n = 4) or were treated conservatively (n = 6). Other treatment modalities included (ventriculoperitoneal shunt, ventriculostomy) (n = 5). In 3 cases treatment was not specified. In comparison to VoGM seen in pediatric or neonatal populations, VoGM in adults generally resulted in more favorable outcomes with only 2 patients reported to have passed away following treatment. CONCLUSION: VoGM remains a rare finding amongst the adult population. Hence, we described the clinical presentation, treatment modalities, and outcomes of the cases described in the English literature. Perhaps due to the rate of thrombosis and the unique angioarchitecture seen in adult VoGM patients, outcomes were generally more favorable than those described in the literature in pediatric or neonate VoGM patients.

The experiences and attitudes of family caregivers of adults with intellectual and developmental disabilities at different timepoints in the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has resulted in increased pressures for family caregivers of adults with intellectual and developmental disabilities (IDD). However, little is known about how their attitudes and perceptions have changed over the course of the pandemic. OBJECTIVE: To compare the COVID-19 experiences and attitudes of two groups of family caregivers, reported at different timepoints in the pandemic: prior to vaccine availability and after. METHODS: As part of a larger research study, family caregivers of adults with IDD from across Canada completed surveys on their COVID-19 experiences. Survey questions included responses about access to supports, stressors, self-efficacy, mental wellbeing, and pandemic impacts on their family member with IDD. Respondents were assigned to either of two groups based on the time of questionnaire completion: late 2020/early 2021 for Group 1 and mid 2022 for Group 2. Descriptive statistics and analysis between groups were reported. RESULTS: Despite being surveyed at different timepoints in the pandemic, both groups indicated concerns regarding lack of professional support and resources, lack of programming, and experiences of loneliness for their family members. However, Group 2 reported greater self-efficacy dealing with COVID-19 related challenges and greater overall mental wellbeing, compared to Group 1. Group 2 caregivers, after which vaccines were widely available in Canada, were largely vaccinated (96.4%). CONCLUSIONS: Despite the COVID-19 pandemic persisting for over two years, family caregivers of adults with IDD reported facing the same challenges as families who reported on their experiences a year prior. Notwithstanding, family caregivers surveyed later in the pandemic described a greater sense of self-efficacy and mental wellbeing.

"Can you hear me now?": a qualitative exploration of communication quality in virtual primary care encounters for patients with intellectual and developmental disabilities.

BACKGROUND: High quality communication is central to effective primary care. The COVID-19 pandemic led to a dramatic increase in virtual care but little is known about how this may affect communication quality. Adults with intellectual and developmental disabilities (IDD) can experience challenges communicating or communicate in non-traditional ways. This study explored how the use of virtual modalities, including telephone and video, affects communication in primary care interactions for patients with IDD. METHODS: This qualitative descriptive study included semi-structured interviews with a multi-stakeholder sample of 38 participants, including 11 adults with IDD, 13 family caregivers, 5 IDD support staff and 9 primary care physicians. Interviews were conducted in Ontario, Canada between March and November 2021 by video-conference or telephone. A mixed inductive and deductive thematic analysis approach was used to code the data and identify themes. Themes were reviewed and refined with members of each stakeholder group. RESULTS: Four elements of communication were identified that were affected by virtual care: (1) patient engagement in the virtual appointment; (2) the ability to hear other participants and have the time and space to be heard; (3) the ability to use nonverbal communication strategies; and (4) the ability to form trusting relationships. In some cases, the virtual platform hindered these elements of communication. Video offered some advantages over telephone to support nonverbal communication, and stimulate engagement; though this could be limited by technical challenges. For adults with IDD who find it difficult to attend in-person appointments, virtual care improved communication quality by allowing them to participate from a space where they were comfortable. CONCLUSION: Though there are circumstances in which virtual delivery can improve communication for patients with IDD, there are also challenges to achieving high quality patient-provider communication over telephone and video. Improved infrastructure and training for providers, patients and caregivers can help improve communication quality, though in some cases it may never be appropriate. A flexible patient-centred approach is needed that includes in-person, telephone and video options for care.

Transitioning a Research Protocol for Videosomnography to Assess Sleep and Nighttime Caregiving Activities in School-Aged Children With Developmental Disabilities During the COVID-19 Pandemic.

INTRODUCTION: The COVID-19 pandemic significantly affected children with developmental disabilities (DDs)' sleep. Videosomnography is a noninvasive, portable time-lapse video recording system to objectively obtain a child's sleep-wake behaviors and parents' caregiving activities in a natural environment. METHOD: From September 2020 to February 2021, we conducted a feasibility study using actigraphy (in mothers) and videosomnography in children with DDs for seven consecutive nights to assess sleep and nighttime caregiving activities. Because of the pandemic, we developed and implemented alternative data collection strategies, such as delivering a "study package" with easy-to-follow written instructions and emailed video-recorded instructions on recording a child's sleep. RESULTS: We aimed to enroll 10 mothers and 10 school-aged children with DDs and achieved this goal. Nine out of 10 mothers completed video recordings of their child's sleep, with only 10% missing data for videosomnography. DISCUSSION: This paper shared adaptations to our videosomnography protocol and lessons learned.

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

The causal effect of being born extremely preterm or extremely low birthweight on neurodevelopment and social-emotional development at 2 years.

AIM: To assess the causal effect of being born extremely preterm (EP; <28 weeks' gestation) or extremely low birthweight (ELBW; <1000 g), compared with being born at term, on neurodevelopment and social-emotional development at 2 years' corrected age. METHODS: Prospective geographical cohort study of children born EP/ELBW over 12 months in 2016 from Victoria, Australia, and term-born controls. Children were assessed at 2 years' corrected age with the Bayley Scales of Infant and Toddler Development-3rd edition and the Infant-Toddler Social and Emotional Assessment. Delay was defined as <-1 standard deviation relative to the mean of controls. The estimand of interest was the mean difference/odds ratio (OR) between the EP/ELBW and control groups estimated using linear/logistic regression, adjusted for multiple pregnancy and social risk. RESULTS: A total of 205 EP/ELBW and 201 controls were assessed at 2 years. Delay/concerns were more common in the EP/ELBW group compared with controls, for cognitive (OR 3.7 [95% confidence interval 2.3, 6.0]), language (5.3 [3.1, 9.0]) and motor (3.9 [2.3, 6.3]) development, and social-emotional competence (4.1 [1.6, 10.2]). CONCLUSION: Being born EP/ELBW has an adverse effect on cognitive, language and motor development, and social-emotional competence at 2 years' corrected age. Close developmental surveillance, including social-emotional development, is recommended.

Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.

Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study.

BACKGROUND: Social support and Quality of life (QoL) are important aspects of life and should be explored during the specific scenario of the pandemic. AIMS: (i) to compare the perceived social support (PSS) in caregivers and the domains of QoL of the caregiver and the child with developmental disabilities (DD) and typical development (TD); (ii) to verify the existence of the association, in each group, between the PSS, and the domain of QoL of the caregiver and the child. METHODS AND PROCEDURES: 52 caregivers of children with DD and 34 with TD participated remotely. We assessed PSS (Social Support Scale), children's QoL (PedsQL-4.0-parent proxy) and caregivers' QoL (PedsQL-Family Impact Module). The groups were compared for the outcomes using the Mann-Whitney test, and Spearman's test evaluated the correlation between the PSS and the QoL (child and caregiver) in each of the groups. OUTCOMES AND RESULTS: There was no difference between groups for PSS. Children with DD presented lower values in PedsQL total, psychosocial health, physical health, social activities, and school activity. Caregivers of children with TD presented lower values in PedsQL family total, physical capacity, emotional aspect, social aspect, daily activities, and higher value in communication. In the DD group, we found a positive relationship between PSS with child: Psychosocial Health (r = 0.350) and Emotional Aspect (r = 0.380), and with family: Total (r = 0.562), Physical Capacity (r = 0.402), Emotional Aspect (r = 0.492), Social Aspect (r = 0.606), Communication (r = 0.535), Concern (r = 0.303), Daily Activities (r = 0.394) and Family Relationships (r = 0.369). In the TD group, we found that PSS was positively associated with Family: Social Aspect (r = 0.472) and Communication (r = 0.431). CONCLUSIONS AND IMPLICATIONS: During the COVID-19 pandemic, despite both groups presenting similar PSS, there are important differences in QoL between them. For both groups, greater levels of perceived social support are associated with greater caregiver-reported in some domains of the child's and caregiver's QoL. These associations are more numerous, especially for the families of children with DD. This study provides a unique view into the relationships between perceived social support and QoL during the "natural experiment" of living through a pandemic.

Developmental Impairment in Children Exposed to Sars-Cov-2 in Utero: A Brazilian Cohort Study. (preprint)

Background The effects of in-utero exposure to maternal SARS-CoV-2 infection on the offspring's neurodevelopment are still unknown.Methods We performed a prospective cohort of babies exposed to SARS-Cov-2 during pregnancy, and a control group of unexposed babies in a low-income area in Northeastern Brazil. All data were prospectively collected from medical records. Children’s neurodevelopment was assessed using the guide for Monitoring Child Development in the IMCI context and the Ages & Stages Questionnaire (ASQ-3), at ages 4, 6, and 12 months. Maternal depressive symptoms were assessed using the Edinburgh Postnatal Depression Scale (EPDS).Results We followed 127 children for one year, 69 children in the COVID-19 exposed Group (EG), and 68 in the control group (CG). All mothers were unvaccinated at the time included in the cohort. Maternal demographics were similar in the two groups, but prematurity was more prevalent in mothers infected with COVID-19 (21.7% vs. 8.8%, p = .036) and EPDS scores were also significantly higher among the EG (M = 11.00, SD = 6.00 vs. M = 8.68, SD = 4.72, p = 0.04). Both groups had similar rates of cesarean delivery, Apgar scores, average birth weight, head circumference and length at birth. 20.3% of EG children and 5.9% of the CG received a diagnosis of neurodevelopmental delay within 12 months of life (p = 0.013, RR = 3.44; 95% CI, 1.19–9.95). 10% of EG children presented abnormalities at the cranial ultrasound.Conclusions COVID-19 exposure was associated with neurodevelopmental impairment. This study highlights the importance of specific guidelines in the follow-up of children exposed to in-utero SARS-CoV-2 in order to mitigate or prevent long-term effects on children’s health.

Trajectories of children and adolescents attending a psychiatric emergency unit during the COVID-19 confinements: 2020-2022 longitudinal study (preprint)

Introduction: The prevalence of psychiatric disorders has not shifted widely through the COVID pandemic, except for some specific groups such as young people or women. Our objective is to examine prospectively the evolution of children and adolescents who consulted in a psychiatric emergency service during the COVID-19 confinements. Method: We collected prospective clinical information about 296 young people under 18 who visited a tertiary hospital for psychiatric reasons during the confinement periods in Spain. Clinical diagnoses, suicide attempts, hospital admissions, and pharmacological prescriptions were extracted from electronic health records through 2020, 2021, and 2022. Features of those who maintained psychiatric care and those who did not were compared. Results: Three out of four children and adolescents who visited the psychiatric emergency department during the confinements continued psychiatric care at the end of 2022. Those who did not showed better premorbid adjustment at baseline. During follow-up, diagnoses of neurodevelopmental disorders and eating disorders, as well as the dosage of psychotropic drug prescriptions, increased. The diagnoses of major depressive disorder and eating disorder at baseline were associated with attempting suicide during follow-up. Patients with internalizing symptoms were admitted earlier than those with externalizing symptoms but no differences were found in terms of suicide attempts. Conclusions: The continuity of psychiatric care after an initial emergency visit during the confinements implied greater clinical severity, as reflected by changes in clinical diagnoses and pharmacological regimens. Emergent symptoms of depression or eating disorders after social distancing or isolation could predict subsequent suicidal behavior in young populations.

[The situation of people with intellectual and developmental disabilities in the COVID-19 pandemic-risk factors, problem areas, and measures]. / Die Situation von Menschen mit geistiger Behinderung in der COVID-19-Pandemie ­ Risikofaktoren, Problembereiche, Maßnahmen.

Many people with intellectual and developmental disabilities (IDD) were much more affected by COVID-19 than the average population. The morbidity in this population group was significantly higher due to the form of their housing and care as well as disability-associated health factors (such as Down's syndrome). This led, among other things, to a higher incidence of inpatient settings, a higher mortality rate among hospitalized patients, and a higher case fatality rate among certain subgroups. Risk factors were co-diseases such as dysphagia, epilepsy, or mental disorders. In addition, there were health consequences from restrictive exposure prophylaxis measures at the beginning of the COVID-19 pandemic.This overview article describes the main developments in the care of people with IDD since the beginning of the pandemic. New mental problems or an increase in existing mental problems occurred more frequently in people with IDD who were cared for on an outpatient basis or by relatives. People with IDD in inpatient residential facilities were less frequently affected. The main reasons for psychological problems were lack of social contacts, lost work and employment opportunities, the frightening pandemic situation, and the major structural and personnel changes in the facilities at the beginning of the pandemic. During the pandemic, there were also problems with the implementation of therapeutic and preventive measures. On the other hand, especially in the inpatient area, the "slowing down of life" associated with the restrictions at the beginning of the pandemic also had a stress-reducing effect on some of the people with IDD and was perceived by them as something positive. Caregivers had more time for the genuine (i.e., pedagogical) work. Overall, it was shown that health-promoting measures must also take into account the great heterogeneity of the people with IDD and their living conditions during the pandemic.

Health Equity for Individuals With Intellectual and Developmental Disabilities.

This Viewpoint discusses 3 types of systemic health inequity experienced by individuals with intellectual and developmental disabilities­stigma, exclusion, and devaluation of worth; underrepresentation in population epidemiology and research; and inadequate access to care and social services­and suggests potential approaches to ameliorating inequities in each of these areas.

The Role of Information and Knowledge in COVID-19 Vaccination Among People With Intellectual and Developmental Disabilities and Their Families.

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.