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Background The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes. Aim The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes – Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19. Method The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts’ hub. Pre-, post- and follow-up evaluation data were collected. Results Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001). Conclusion Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Introduction Removing a child from their family is the option of last resort for social services. However, decisions to place children into care are occurring more frequently and earlier in children's lives, with newborn discharge to social services being a particular concern due to the effects of mother-newborn separations on child development. Women with disabilities face negative assumptions about their parenting capacity, but little is known about their rates of newborn discharge to social services. Objectives To examine the risk of discharge to social services among newborns of women with and without disabilities. Methods We conducted a population-based cohort study of singleton livebirths in Ontario, Canada, 2008-2019. We used modified Poisson regression to estimate the relative risk (RR) of discharge to social services immediately after the birth hospital stay, comparing newborns of women with physical (n = 114,685), sensory (n = 38,268), intellectual/developmental (n = 2,094), and multiple disabilities (n = 8,075) to newborns of women without a disability (n = 1,221,765). Within each group, we also examined maternal sociodemographic, health, health care, and pregnancy-related characteristics associated with the outcome. Results Compared to newborns of women without disabilities (0.2%), newborns of women with physical (0.5%; aRR 1.53, 95% CI 1.39-1.69), sensory (0.4%; aRR 1.34, 95% CI 1.12-1.59), intellectual/developmental (5.6%; aRR 5.34, 95% CI 4.36-6.53), and multiple disabilities (1.7%; aRR 3.09, 95% CI 2.56-3.72) had increased risk of being discharged to social services after the birth hospital stay. Within each group, the strongest predictors of the outcome were young maternal age, low income quintile, social assistance, maternal mental illness and substance use disorders, inadequate prenatal care, and neonatal morbidity. Conclusions Newborns of women with disabilities are at increased risk of being discharged to social services after the birth hospital stay. These findings can be used to inform the development of tailored supports for new mothers with disabilities and their infants.

Abstract Background In January 2018, the Government of Ontario, Canada, initiated a universal pharmacare program (OHIP+) for all individuals aged 24 years and younger. In April 2019, the program was amended to cover only children and youth without private insurance. Because benzodiazepines are commonly prescribed to children and youth despite their potential hazards, we examined whether changes in publicly-funded drug coverage influenced benzodiazepine dispensing trends in this demographic. Methods We conducted a population-based natural experiment study of benzodiazepine dispensing to children and youth in Ontario between January 2013 and March 2020. We used interventional autoregressive integrated moving average models to estimate the impact of OHIP + and its subsequent modification on these trends. Results The implementation of OHIP + was associated with an immediate increase in the monthly rate of benzodiazepine dispensing of 12.9 individuals per 100,000 population (95% confidence interval [CI]; 7.5 to 18.3 per 100,000). Benzodiazepine dispensing rates rose from 214.2 to 241.5 per 100,000 from December 2017 to March 2019, a 12.8% (95% CI 9.6–16.0%) increase. In stratified analyses, increases were most pronounced among females, children and youth living in the lowest income neighbourhoods and individuals aged 20 to 24. The April 2019 modification to OHIP + was not associated with changes in monthly benzodiazepine dispensing trends (0.39 individuals per 100,000; 95% CI -1.3 to 2.1 per 100,000). However, rates remained elevated relative to the period preceding OHIP + implementation. Conclusions Implementation of a publicly-funded pharmacare program resulted in more children and youth being prescribed benzodiazepines.

Abstract Background Despite the increasing global population of individuals with intellectual and developmental disabilities (IDD), this population remains especially vulnerable to health disparities through several factors such as a lack of access to sufficient medical care and poor determinants of health. To add, numerous studies have shown that healthcare professionals are still insufficiently prepared to support this population of patients. This review synthesizes the literature on current pre-graduate IDD training programs across healthcare professions with the goal of informing the creation of evidence-based curricula. Methods Four major databases were searched for current pre-graduate IDD training interventions for healthcare professionals. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram and the Best Evidence Medical Educations systematic review guide were used to frame our collection and analysis. Results Of the 8601 studies screened, 32 studies were identified, with most studies involving medical students (50%). Of note, 35% of studies were interprofessional. Most interventions utilized multiple pedagogical methods with a majority including clinical experiences (63%) followed by theoretical teaching (59%). Kirkpatrick levels showed 9% were level 0, 6% were level 1, 31% were level 2A, 31% were level 2B, 19% were level 3, 3% were level 4A, and none were level 4B. Conclusions There is a paucity of formally evaluated studies in pre-graduate health professional IDD education. As well, there are a lack of longitudinal learning opportunities and integration into formal curriculum. Strengths identified were the use of multimodal approaches to teaching, including interprofessional approaches to optimize team competencies.

BackgroundThe COVID-19 pandemic was associated with increases in the prevalence of depression, anxiety and behavioural problems among children and youth. Less well understood is the influence of the pandemic on antidepressant and antipsychotic use among children. This is important, as it is possible that antidepressants and antipsychotics were used as a “stop-gap” measure to treat mental health symptoms when in-person access to outpatient care and school-based supportive services was disrupted. Furthermore, antipsychotics and antidepressants have been associated with harm in children and youth. We examined trends in dispensing of these medications two years following the pandemic among children 18 years of age and under in Ontario, Canada.MethodsWe conducted a population-based time-series study of antidepressant and antipsychotic medication dispensing to children and adolescents ≤18 years old between September 1, 2014, and March 31, 2022. We measured monthly population-adjusted rates of antidepressant and antipsychotics obtained from the IQVIA Geographic Prescription Monitor (GPM) database. We used structural break analyses to identify the pandemic month(s) when changes in the dispensing of antidepressants and antipsychotics occurred. We used interrupted time series models to quantify changes in dispensing following the structural break and compare observed and expected use of these drugs.ResultsOverall, we found higher-than-expected dispensing of antidepressants and antipsychotics in children and youth. Specifically, we observed an immediate step decrease in antidepressant dispensing associated with a structural break in April 2020 (−55.8 units per 1,000 individuals; 95% confidence intervals [CI] CI: −117.4 to 5.8), followed by an increased monthly trend in the rate of antidepressant dispensing of 13.0 units per 1,000 individuals (95% CI: 10.2–15.9). Antidepressant dispensing was consistently greater than predicted from September 2020 onward. Antipsychotic dispensing increased immediately following a June 2020 structural break (26.4 units per 1,000 individuals; 95% CI: 15.8–36.9) and did not change appreciably thereafter. Antipsychotic dispensing was higher than predicted at all time points from June 2020 onward.ConclusionWe found higher-than-expected dispensing of antidepressants and antipsychotics in children and youth. These increases were sustained through nearly two years of observation and are especially concerning in light of the potential for harm with the long-term use of antipsychotics in children. Further research is required to understand the clinical implications of these findings.

Objectives Despite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role.Design and setting A mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions.Results Eight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system.Conclusion Study findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.

Abstract 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.

Abstract Background Population-based research examining geographic variability in psychotropic medication dispensing to children and youth and the sociodemographic correlates of such variation is lacking. Variation in psychotropic use could reflect disparities in access to non-pharmacologic interventions and identify potentially concerning use patterns. Methods We conducted a population-based study of all Ontario residents aged 0 to 24 years who were dispensed a benzodiazepine, stimulant, antipsychotic or antidepressant between January 1, 2018, and December 31, 2018. We conducted small-area variation analyses and identified determinants of dispensing using negative binomial generalized estimating equation models. Results The age- and sex-standardized rate of psychotropic dispensing to children and youth was 76.8 (range 41.7 to 144.4) prescriptions per 1000 population, with large variation in psychotropic dispensing across Ontario’s census divisions. Males had higher antipsychotic [rate ratio (RR) 1.40; 95% confidence interval (CI) 1.36 to 1.44) and stimulant (RR 1.75; 95% CI 1.70 to 1.80) dispensing rates relative to females, with less use of benzodiazepines (RR 0.85; 95% CI 0.83 to 0.88) and antidepressants (RR 0.81; 95% CI 0.80 to 0.82). Lower antipsychotic dispensing was observed in the highest income neighbourhoods (RR 0.72; 95% CI 0.70 to 0.75) relative to the lowest. Benzodiazepine (RR 1.12; 95% CI 1.01 to 1.24) and stimulant (RR 1.11; 95% CI 1.01 to 1.23) dispensing increased with the density of mental health services in census divisions, whereas antipsychotic use decreased (RR 0.82; 95% CI 0.73 to 0.91). The regional density of child and adolescent psychiatrists and developmental pediatricians (RR 1.00; 95% CI 0.99 to 1.01) was not associated with psychotropic dispensing. Conclusion We found significant variation in psychotropic dispensing among young Ontarians. Targeted investment in regions with long wait times for publicly-funded non-pharmacological interventions and novel collaborative service models may minimize variability and promote best practices in using psychotropics among children and youth.

BackgroundIn 2011, the Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotics in Children (CAMESA) published guidelines for the metabolic monitoring of antipsychotic-treated children and youth. Population-based studies examining adherence to these guidelines are needed to ensure the safe use of antipsychotics in children and youth.MethodsWe conducted a population-based study of all Ontario residents aged 0 to 24 who were newly dispensed an antipsychotic between April 1, 2018, and March 31, 2019. We estimated prevalence ratios (PRs) and 95% confidence intervals (CI) associating sociodemographic characteristics with the receipt of baseline and follow-up (3- and 6-month) laboratory testing using log-Poisson regression models.ResultsOverall, 6,505 of 27,718 (23.5%) children and youth newly dispensed an antipsychotic received at least one guideline-recommended baseline test. Monitoring was more prevalent among individuals aged 10 to 14 years (PR 1.20; 95% CI 1.04 to 1.38), 15 to 19 years (PR 1.60; 95% CI 1.41 to 1.82), and 20 to 24 years (PR 1.71; 95% CI 1.50 to 1.94) compared to children under the age of 10. Baseline monitoring was associated with mental health-related hospitalizations or emergency department visits in the year preceding therapy (PR 1.76; 95% CI 1.65 to 1.87), a prior diagnosis of schizophrenia (PR 1.20; 95% CI 1.14 to 1.26) or diabetes (PR 1.35; 95% CI 1.19 to 1.54), benzodiazepine use (PR 1.13; 95% CI 1.04 to 1.24), and receipt of a prescription from a child and adolescent psychiatrist or developmental pediatrician versus a family physician (PR 1.41; 95% CI 1.34 to 1.48). Conversely, monitoring was less frequent in individuals co-prescribed stimulants (PR 0.83; 95% CI 0.75 to 0.91). The prevalence of any 3- and 6-month follow-up monitoring among children and youth receiving continuous antipsychotic therapy at these time points was 13.0% (1,179 of 9,080) and 11.4% (597 of 5,261), respectively. Correlates of follow-up testing were similar to those of baseline monitoring.ConclusionMost children initiating antipsychotic therapy do not receive guideline-recommended metabolic laboratory monitoring. Further research is needed to understand reasons for poor guideline adherence and the role of clinician training and collaborative service models in promoting best monitoring practices.

Background: Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition. Objective: Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women. Design: We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups. Methods: Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the ‘story’ of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways. Results: Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis ‘red flags’ and ‘signals’; (2) ‘non-autism’ mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services. Conclusion: Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.

Abstract Background Effective provider-patient communication is a key element of quality health care, including perinatal care. What constitutes “effective communication” in perinatal care may vary according to the population seeking care, such as women with intellectual and developmental disabilities (IDD) and sensory disabilities. Research broadly indicates that communication issues are among the barriers to perinatal care experienced by women with disabilities. However, few studies have explicitly explored their communication experiences in this context. The purpose of this study was to understand the communication experiences of birthing people with IDD and/or sensory disabilities in perinatal care. Methods We conducted semi-structured interviews with 17 people with IDD (e.g., autism, cognitive delay) and/or sensory disabilities (e.g., d/Deaf, blind) in Ontario, Canada, who had recently given birth, to explore barriers to and facilitators of effective communication in perinatal care. A combination of deductive and inductive thematic analysis guided data analysis. Results We found that birthing people with IDD and/or sensory disabilities encountered multiple barriers to effective communication in perinatal care, namely, lack of policies and guidelines, lack of provider experience, lack of provider effort, as well as ableism and provider assumptions. Facilitators included knowledgeable, aware, and supportive providers; access to communication aids and services; tailoring information to patients’ disability-related communication needs; empathic communication; and, communication among providers. Conclusion Unmet communication needs may contribute to negative health and social outcomes for birthing people with disabilities and their newborns. Accessibility policy implementation and practice change are needed to meet the communication needs of people with IDD and/or sensory disabilities in perinatal care to ensure positive experiences and outcomes.

Severe behavioral problems (SBPs) are common contributors to morbidity and reduced quality of life for adults with intellectual and developmental disabilities (IDD) and their families. Current medications for SBPs show equivocal effectiveness and are associated with a high risk of side effects. New and safe treatments are urgently needed. While preliminary studies suggest that medical cannabinoids, particularly the synthetic cannabinoid nabilone, are plausible treatment options for SBPs in adults with IDD, data on the tolerability, safety and efficacy of nabilone in this population has never been investigated. Thus, we propose this first-ever Phase I pre-pilot open-label clinical trial to obtain preliminary data on the adherence, tolerability and safety profiles of nabilone in adults with IDD, and explore changes in SBPs pre- to post-treatment. We hypothesize that nabilone has favorable tolerability and safety profile for adults with IDD. The preliminary results will inform the next-stage pilot randomized controlled trials, followed by fully powered clinical trials eventually. This research helps fill the evidence gap in the use of cannabinoids in individuals with IDD to meet the needs of patients, families, and service providers.

Background: Autistic women experience life differently than autistic men. For example, autistic women tend to be diagnosed significantly later than autistic men, they experience a higher number of traumas, and are at increased risk for mental health conditions. Given gender-specific life experiences, autistic women may benefit from gender-specific group-based supports. Virtual mindfulness has been shown to be helpful in improving well-being among autistic adults; however, limited research has explored the impact of virtual mindfulness when it is delivered to a group of autistic women only. Objectives: The aim of this article is to describe a preliminary evaluation of a virtual mindfulness group piloted for autistic women. Five key areas of feasibility were assessed in the current study: demand, implementation, acceptability, practicality, and limited efficacy testing. Methods: Twenty-eight women participated in a 6-week virtual autism-informed mindfulness program and were asked to complete measures assessing psychological distress, self-compassion, and mindfulness at pre and post. Participants were also asked to complete a satisfaction survey after the program. Results: Results showed that the program was feasible in terms of demand, implementation, practicality, and acceptability. While quantitative results showed there were no changes in psychological distress, self-compassion, and mindfulness from pre- to post-program, qualitative results showed some benefits. Conclusion: Given the unique challenges that some autistic women experience, offering groups to autistic women may have some value and it would be important to continue exploring this topic area.

Background Individuals with intellectual and developmental disability (IDD) can have a high prevalence of pain, which can be managed with prescription opioids. However, the prevalence of substance use disorder is also high in this population, raising concern about opioid-related adverse events. Aims To assess the risk of opioid-related adverse events following opioid initiation among adults with versus without IDD. Method We conducted a population-based, propensity score matched cohort study on all adults starting prescription opioid therapy in Ontario, Canada, between January 2013 and December 2018. The outcomes of interest were opioid toxicity, new opioid use disorder (OUD) diagnosis and dose escalation (≥90 mg morphine or equivalent) in the year after opioid initiation. We used Cox proportional hazards models to assess the association between IDD diagnosis and each outcome. Results The hazards of opioid toxicity and OUD were significantly higher in those with IDD compared with those without IDD in unmatched analyses (opioid toxicity hazard ratio 3.19, 95% CI 2.81–5.18; OUD hazard ratio 2.36, 95% CI 2.10–2.65), whereas the hazard of dose escalation was significantly lower (hazard ratio 0.76, 95% CI 0.66–0.88). Findings were no longer significant in propensity score matched models for opioid toxicity and dose escalation, whereas the hazard of OUD diagnosis was attenuated substantially in those with IDD (hazard ratio 0.79, 95% CI 0.68–0.91). Conclusions IDD diagnosis is not a driver of opioid-related harm. The increased risk we observed is likely driven by various risk factors often present in this population.

BackgroundThe COVID-19 pandemic has led to an unprecedented increase in the delivery of virtual primary care. Adults with intellectual and developmental disabilities (IDDs) have complex health care needs, and little is known about the value and appropriateness of virtual care for this patient population. ObjectiveThe aim of this study was to explore the accessibility of virtual primary care for patients with IDDs during the pandemic. MethodsWe conducted semistructured interviews with 38 participants in Ontario, Canada between March and November 2021. A maximum variation sampling strategy was used to achieve a diverse sample including 11 adults with IDDs, 13 family caregivers, 5 IDD support staff members, and 9 primary care physicians. An iterative mixed inductive and deductive thematic analysis approach was used to code the data and synthesize higher-level themes. The analysis was informed by the Levesque Patient-Centered Access to Health Care Framework. ResultsWe identified themes related to 4 of 5 access-to-care dimensions that highlighted both the benefits and challenges of virtual care for adults with IDDs. The benefits included saving time spent traveling and waiting; avoiding anxiety and challenging behavior for patients who struggle to attend in-person visits; allowing caregivers who live far away from their loved ones to participate; reducing illness transmission; and allowing health care providers to see patients in their home environments. The challenges included lack of access to necessary technology, lack of comfort or skill using technology, and lack of nonverbal communication; difficulty engaging and establishing rapport; patient exclusion from the health care encounter; and concerns about privacy and confidentiality. An overarching theme was that “one size does not fit all,” and the accessibility of virtual care was dependent on the interaction between the following 5 categories of factors: patient characteristics, patient context, caregiver characteristics, service context, and reason for a particular primary care visit. Though virtual care was not always appropriate, in some cases, it dramatically improved patients’ abilities to access necessary health care. ConclusionsThis study suggests that a flexible patient-centered system including multiple delivery modalities is needed to ensure all patients have access to primary care. Implementing this system will require improved virtual care platforms, access to technology for patients and caregivers, training for primary care providers, and appropriately aligned primary care funding models.

Objectives Equitable vaccine distribution was essential in supporting Ontario’s COVID-19 response, particularly for persons with intellectual and developmental disabilities (IDD), who have been disproportionately impacted by the pandemic. An Applied Health Research Question (AHRQ) request through ICES, sought to report on COVID-19 vaccination uptake in adults with and without IDD. Approach To examine the proportion of adults with IDD vaccinated for COVID-19, a request from the Ministry of Children, Community and Social Services (MCCSS) was approved by the ICES-AHRQ team. A secondary goal was to explore if vaccinated individuals with IDD experienced similar levels of protection from COVID-19 infection, to the general population. The open cohort was derived by linking vaccination events reported in Ontario COVID-19 Vaccine Data, between December 2020 to December 2021, to several administrative health databases. An algorithm was used to define IDD by a series of inpatient hospitalizations, emergency department and/or physician visits, with IDD diagnostic codes. Results The proportion who received at least two doses was similar between both groups (82% (IDD); 83% (non-IDD)). However, despite emerging evidence suggesting that high-risk populations should receive a third dose, a lower proportion of people with IDD (25%), compared to the general population without IDD (30%), had done so. The IDD subpopulation is generally younger, and partially explained the third dose findings when examined by age. Withal, adults with IDD vaccinated with at least two doses were mostly male (62% vs 48%), 18-29 years of age (44% vs 17%), and from the lowest neighborhood income quintile (26% vs 18%), compared to the non-IDD population, respectively. Cumulatively, adults with IDD had comparable rates of confirmed breakthrough case infections following vaccination (17%), to those without IDD (19%). Conclusion/Implications Administrative health data and analytics through the ICES-AHRQ program were used in responding to COVID-19, and providing public health guidance, for those with IDD. To inform decision making and policy actions related to immediate vaccination strategies, MCCSS used such findings to target vaccination efforts in specific IDD subpopulations, across Ontario.

Background: The COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co-designed tool, the COVID Check-in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check-in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty-four percent of participants engaged in the Health Check-in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check-in, along with challenges using the COVID Check-in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical.

The COVID-19 pandemic has impacted the lives and well-being of all people globally, with consequences being observed across all domains from physical and mental health, to education and employment outcomes, to access to community supports and services. However, the disproportionate impact of the COVID-19 pandemic and its associated public health restrictions on individuals with intellectual and developmental disabilities (IDD) has largely been overlooked. Not only do people with IDD have a greater risk of severe complications and death from the virus as shown in large-scale studies, but they also face significant short- and long-term consequences of COVID-related public health measures on their mental health and well-being. At a time when this vulnerable population is already feeling undervalued, ignored, and forgotten, it is imperative that the risks facing adults and children with IDD—as well as their families and caregivers—are recognized, valued, and addressed through a disability-inclusive approach to Canada’s pandemic policy response planning. This requires both a mainstreaming of disability inclusion into all COVID-19 response and recovery policies as well as disability-specific policies to address the unique barriers and challenges encountered by people with IDD during the pandemic. The recommendations in this policy briefing aim to achieve a more inclusive, accessible, and sustainable Canada for people with IDD both during and after the pandemic—an approach that will result in benefits for all of society.

Abstract Background There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls’/women’s physical health. Methods A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women. We screened 1112 unique articles, with 40 studies meeting the inclusion criteria. We used a convergent iterative process to synthesize this content into broad thematic areas. Results Autistic girls/women experience more overall physical health challenges compared to non-autistic girls/women and to autistic boys/men. Emerging evidence suggests increased prevalence of epilepsy in autistic girls/women compared to non-autistic girls/women and to autistic boys/men. The literature also suggests increased endocrine and reproductive health conditions in autistic girls/women compared to non-autistic girls/women. Findings regarding gastrointestinal, metabolic, nutritional, and immune-related conditions are preliminary and inconsistent. Limitations The literature has substantial heterogeneity in how physical health conditions were assessed and reported. Further, our explicit focus on physical health may have constrained the ability to examine interactions between mental and physical health. The widely differing research aims and methodologies make it difficult to reach definitive conclusions. Nevertheless, in keeping with the goals of a scoping review, we were able to identify key themes to guide future research. Conclusions The emerging literature suggests that autistic girls/women have heightened rates of physical health challenges compared to non-autistic girls/women and to autistic boys/men. Clinicians should seek to provide holistic care that includes a focus on physical health and develop a women’s health lens when providing clinical care to autistic girls/women.

BackgroundPeople with intellectual and developmental disabilities are at increased health-related risk due to the COVID-19 pandemic. Virtual training programs that support providers in caring for the physical and mental health needs of this population, as well provide psychological support to the providers themselves, are needed during the pandemic. ObjectiveThis paper describes the design, delivery, and evaluation of a virtual educational COVID-19–focused Extension for Community Healthcare Outcomes program to support providers during the COVID-19 pandemic in caring for the mental health of people with intellectual and developmental disabilities. MethodsA rapid design thinking approach was used to develop a 6-session program that incorporates mindfulness practice, a wellness check, COVID-19–related research and policy updates, a didactic presentation on a combination mental health and COVID-19 related topic, and a case-based discussion to encourage practical learning. We used the first 5 outcome levels of Moore’s evaluation framework—focusing on participation, satisfaction, learning, self-efficacy, and change in practice—which were rated (out of 5) by care providers from health and disability service sectors, as well as additional reflection measures about innovations to the program. Qualitative feedback from open-text responses from participants were analyzed using modified manifest content analysis. ResultsA total of 104 care providers from health and disability service sectors participated in the program. High levels of engagement (81 participants per session on average) and satisfaction (overall satisfaction score: mean 4.31, SD 0.17) were observed. Self-efficacy (score improvement: 19.8%), support, and coping improved. Participants also rated the newly developed COVID-19 program and its innovative components highly. Open text feedback showed participants felt that the Extension for Community Healthcare Outcomes program expanded their knowledge and competency and created a sense of being part of a community of practice; provided value for the COVID-19 innovations; supported resource-sharing within and beyond program participants; and facilitated changes to participants’ approaches to client care in practice and increased participants’ confidence in supporting clients and families. ConclusionsThe Extension for Community Healthcare Outcomes program is an effective model for capacity-building programs with a shared-learning approach. Future iterations should include targeted evaluation of long-term outcomes such as staff burnout.

Background: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. Method: SO athletes (n = 44) and their caregivers (n = 29) participated in a 6-week adapted virtual mindfulness intervention. Athletes completed mindfulness and well-being questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were conducted immediately following the intervention. Results: The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete well-being and mental health, and caregiver stress and mindfulness post-intervention. Conclusions: Adapted virtual mindfulness groups may be an effective intervention in improving the well-being of adults with intellectual disabilities and their caregivers.

Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS may help improve uptake of vaccination. The T21RS COVID-19 Initiative launched an international survey to obtain information on safety and efficacy of COVID-19 vaccines for individuals with DS. De-identified survey data collected between March and December 2021 were analyzed. Of 2172 individuals with DS, 1973 (91%) had received at least one vaccine dose (57% BNT162b2), 107 (5%) were unvaccinated by choice, and 92 (4%) were unvaccinated for other reasons. Most participants had either no side effects (54%) or mild ones such as pain at the injection site (29%), fatigue (12%), and fever (7%). Severe side effects occurred in

Introduction: Adults with intellectual and developmental disabilities (IDD) have high rates of morbidity and are less likely to receive preventive care. Emergency departments and primary care clinics are important entry points into the health care system. Improving care in these settings can lead to increased prevention activities, early disease identification, and ongoing management. We studied barriers and facilitators to improving the care of patients with IDD in three primary and three emergency care sites in Ontario. Methods: Data sources included structured implementation logs at each site, focus groups (n = 5) and interviews (n = 8). Barriers and facilitators were coded deductively based on the Consolidated Framework for Implementation Research (CFIR). Synthesis to higher level themes was achieved through review and discussion by the research team. Focus was given to differences between higher and lower implementing sites. Results: All sites were challenged to prioritize care improvement for a small, complex population and varied levels of implementation were achieved. Having national guidelines, using local data to demonstrate need and sharing evidence on value were important engagement strategies. Factors present at higher implementing sites included strong champions, alignment with site mandate, and use of electronic prompts/reminders. Lower implementing sites showed more passive endorsement of the innovation and had lower capacity to implement. Conclusion: Providing effective care for small, complex groups, such as adults with IDD, is critical to improving long-term health outcomes but is challenging to achieve. At a systemic level, funding incentives, access to expertise and improved electronic record systems may enhance capacity.

Introduction. Les adultes souffrant d’une déficience intellectuelle ou développementale(DID) présentent des taux de morbidité élevés et risquent davantage de ne pas recevoir de soins préventifs. Les services d’urgence des hôpitaux et les cliniques de soins primaires sont d’importants points d’entrée dans le système de soins de santé. Améliorer les soins dans ces lieux est susceptible d’améliorer les activités préventives, le dépistage précoce des maladies et la gestion courante. Nous avons étudié les éléments qui favorisent ou freinent l’amélioration des soins de santé destinés aux patients souffrant d’une DID dans trois établissements de soins primaires et trois services d’urgences de l’Ontario. Méthodologie. Les sources de données consistaient notamment en des journaux de mise en oeuvre structurée sur chacun des sites, des discussions de groupe (n=5) et des entrevues (n=8). Les éléments qui favorisent ou freinent l’amélioration des soins de santé ont été codés par déduction à partir du Consolidated Framework for Implementation Research (CFIR). Les thèmes de plus haut niveau ont été obtenus en faisant la synthèse des discussions et des examens de l’équipe de recherche. L’accent a été mis sur les différences entre les sites de mise en oeuvre de haut et de bas niveau. Résultats. Mis au défi de privilégier l’amélioration des soins destinés à une population complexe de petite taille, les sites ont atteint divers niveaux de mise en oeuvre. Disposer de lignes directrices à l’échelle nationale, utiliser des données locales pour montrer les besoins et mettre en commun les données probantes sur l’intérêt du projet ont constitué des stratégies de mobilisation importantes. Les sites de mise en oeuvre de haut niveau ont présenté des facteurs particuliers, comme la présence de fervents partisans, la conformité avec la mission du site et l’utilisation d’invitations ou de rappels électroniques. Les sites de mise en oeuvre de bas niveau ont accueilli l’innovation plus passivement et ont présenté des capacités de mise en oeuvre inférieures. Conclusion. Il est indispensable de permettre aux groupes complexes de petite taille, comme celui les adultes souffrant d’une DID, de recevoir des soins efficaces afin de voir leur état de santé s’améliorer à long terme, mais cet objectif est difficile à atteindre. À l’échelle du système, des mesures d’incitation au financement, des moyens d’accès à l’expertise et l’amélioration des systèmes de dossiers électroniques pourraient améliorer les choses.

BackgroundAttention to research and planning are increasingly being devoted to newcomer health, but the needs of newcomers with disabilities remain largely unknown. This information is difficult to determine since population-level data are rarely available on newcomers or on people with intellectual and developmental disabilities (IDD), although in Ontario, Canada these databases are accessible. This study compared the prevalence of IDD among first generation adult newcomers to adult non-newcomers in Ontario, and assessed how having IDD affected the health profile and health service use of newcomers.MethodsThis population-based retrospective cohort study of adults aged 19-65 in 2010 used linked health and social services administrative data. Prevalence of IDD among newcomers (n = 1,649,633) and non-newcomers (n = 6,880,196) was compared. Among newcomers, those with IDD (n = 2,830) and without IDD (n = 1,646,803) were compared in terms of health conditions, and community and hospital service use.ResultsPrevalence of IDD was lower in newcomers than non-newcomers (171.6 versus 898.3 per 100,000 adults, pConclusionFirst generation adult newcomers have lower rates of IDD than non-newcomers. How much of this difference is attributable to admission policies that exclude people expected to be high health service users versus how much is attributable to our methodological approach is unknown. Finding more medical and psychiatric comorbidity, and more health service use among newcomers with IDD compared to newcomers without IDD is consistent with patterns observed in adults with IDD more generally. To inform polices that support newcomers with IDD future research should investigate reasons for the prevalence finding, barriers and facilitators to timely health care access, and pathways to care.

BackgroundWhile up to 45% of individuals with intellectual and developmental disabilities (IDD) have a comorbid psychiatric disorder, and antipsychotics are commonly prescribed, gender differences in the safety of antipsychotics have rarely been studied in this population.AimsTo compare men and women with IDD on medical outcomes after antipsychotic initiation.MethodOur population-based study in Ontario, Canada, compared 1457 women and 1951 men with IDD newly initiating antipsychotic medication on risk for diabetes mellitus, hypertension, venous thromboembolism, myocardial infarction, stroke and death, with up to 4 years of follow-up.ResultsWomen were older and more medically complex at baseline. Women had higher risks for venous thromboembolism (HR 1.72, 95% CI 1.15–2.59) and death (HR 1.46, 95% CI 1.02–2.10) in crude analyses; but only thromboembolism risk was greater for women after covariate adjustment (aHR 1.58, 95% CI 1.05–2.38).ConclusionsGender should be considered in decision-making around antipsychotic medications for individuals with IDD.

Emerging research shows that Acceptance and Commitment Therapy (ACT) may improve mental health for caregivers. Parents of autistic children, adolescents, and adults (N = 54) were randomly assigned to either complete a brief group-based ACT intervention or remain on the waitlist. Participants completed surveys immediately prior to randomization, and 3-, 7-, and 17-weeks post-randomization. The primary outcome was depression symptoms and secondary outcomes included stress, goal attainment, positive affect, ACT psychological processes, child mental health, and family functioning. Mixed effects linear models testing Group × Time interaction indicated the Treatment group (n = 27) demonstrated greater post-intervention improvements than the Waitlist group (n = 27) in parent depression (p = 0.03, d = -0.64) and family distress (p = 0.04, d = -0.57). Treatment group parents also reported greater short-term gains in positive affect (p =< 0.001, d = 0.77) and personal goal attainment (p = 0.007, d = 0.80), compared to the Waitlist group. Although there was no significant Group × Time interaction for other outcomes, stress (b = -2.58, p = 0.01), defusion (b = -3.78, p = 0.001), and experiential avoidance (b = -4.22, p = 0.01) showed improvement for the Treatment group, but not the Waitlist group, at post-intervention. All Treatment group improvements were maintained at follow-up. Results suggest that a brief ACT group intervention is efficacious for improving some aspects of mental health for parents of autistic children.

People with intellectual disability have high mental and physical healthcare needs, which must be addressed on individual, local and national levels. Policy interventions informed by research and stakeholder views and extending beyond a focus on health are needed to reduce inequities in this group.

Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

This paper provides information about the prevalence and topography of self-injurious behavior in children and adults with autism spectrum disorder and intellectual disability. Dominant models regarding the etiology of self-injury in this population are reviewed, with a focus on the role of reactivity to pain and sensory input. Neuroimaging studies are presented and suggestions are offered for future research.

Adolescents and adults with an autism spectrum disorder (ASD) who do not have an intellectual impairment or disability (ID), described here as individuals with high-functioning autism spectrum disorder (HFASD), represent a complex and underserved psychiatric population. While there is an emerging literature on the mental health needs of children with ASD with normal intelligence, we know less about these issues in adults. Of the few studies of adolescents and adults with HFASD completed to date, findings suggest that they face a multitude of cooccurring psychiatric (e.g., anxiety, depression), psychosocial, and functional issues, all of which occur in addition to their ASD symptomatology. Despite this, traditional mental health services and supports are falling short of meeting the needs of these adults. This review highlights the service needs and the corresponding gaps in care for this population. It also provides an overview of the literature on psychiatric risk factors, identifies areas requiring further study, and makes recommendations for how existing mental health services could include adults with HFASD.

Study Objective. We describe and contrast medical to psychobehavioral emergency visits made by a cohort of adults with intellectual disabilities. Methods. This was a study of 221 patients with intellectual disabilities who visited the emergency department because of a psychobehavioral or medical emergency. Patient profiles are described and logistic regression was used to assess predictors of psychobehavioral emergencies in this group, including age, residence, psychiatric diagnosis, cognitive level, and life events. Results. Ninety-eight individuals had medical emergencies and 123 individuals presented with psychobehavioral emergencies. The most common medical issue was injury and the most common psychobehavioral issue was aggression. In the multivariate analysis, life events (odds ratio (OR) 0.28; 95% confidence interval (CI) 0.10 to 0.75), psychiatric diagnosis (OR 2.35; 95% CI 1.12 to 4.95), and age group (OR 4.97; 95% CI 1.28 to 19.38) were associated with psychobehavioral emergencies. Psychobehavioral emergencies were more likely to result in admission and caregivers reported lower rates of satisfaction with these visits. Conclusion. Emergency departments would benefit from greater understanding of the different types of presentations made by adults with intellectual disabilities, given the unique presentations and outcomes associated with them.

People with intellectual disabilities (ID) are at increased risk for mental health problems than the general population. The reasons for this are both biological and social. Current treatment for mental health problems tends to be reactive in nature with less emphasis on how mental health problems can be prevented. A better understanding of the social contributors to mental health in individuals with ID should lead to the prevention of mental health problems in this particularly vulnerable population. Two promising areas of research when thinking about mental health promotion and ID are stress and social support, which are reviewed here.Las personas con discapacidad intelectual (DI) están más expuestas a sufrir problemas de salud mental que la población general. Las razones son tanto biológicas como sociales. El tratamiento actual para los problemas de salud mental tiende a ser reactivo por naturaleza, poniendo menor énfasis en la prevención. Una mejor comprensión de los contribuyentes sociales en la salud mental de los individuos con DI debería llevar a la prevención de problemas de salud mental en esta población particularmente vulnerable. Dos áreas de investigación promisorias cuando se piensa en promoción de la salud mental y DI son el estrés y el apoyo social, que aquí se revisan.