Intellectual And/or Developmental Disabilities Research Articles

Perspectives of Transition-Aged Youth with Intellectual and/or Developmental Disabilities about Self-Advocacy and Civic Engagement

AbstractIn alignment with the rallying cry of the self-advocacy movement, it is critical to center the perspectives of people with disabilities about their lived experiences. Yet, little is known about how youth with intellectual and/or developmental disabilities (IDD) engage in self-advocacy and civic engagement in special education. We conducted focus groups with 15 transition-aged youth with IDD across four states about self-advocacy and civic engagement. Youth with IDD reported engaging in self-advocacy at school, but outside of their individualized education program meetings. Parent advocacy and positive partnerships with educators promoted youth self-advocacy. Youth reported minimal involvement in civic engagement, but they had suggestions for systemic changes to special education. Implications for research and practice are discussed.

Predictors of COVID-19 infection and hospitalization in group homes for individuals with intellectual and/or developmental disabilities

BackgroundMore than seven million people with intellectual and/or developmental disabilities (ID/DD) live in the US and may face an elevated risk for COVID-19. ObjectiveTo identify correlates of COVID-19 and related hospitalizations among people with ID/DD in group homes in Massachusetts. MethodsWe collected data during March 1, 2020–June 30, 2020 (wave 1) and July 1, 2020–March 31, 2021 (wave 2) from the Massachusetts Department of Public Health and six organizations administering 206 group homes for 1035 residents with ID/DD. The main outcomes were COVID-19 infections and related hospitalizations. We fit multilevel Cox proportional hazards models to estimate associations with observed predictors and assess contextual home- and organizational-level effects. ResultsCompared with Massachusetts residents, group home residents had a higher age-adjusted rate of COVID-19 in wave 1 (incidence rate ratio [IRR], 12.06; 95 % confidence interval [CI], 10.51–13.84) and wave 2 (IRR, 2.47; 95 % CI, 2.12–2.88) and a higher age-adjusted rate of COVID-19 hospitalizations in wave 1 (IRR, 17.64; 95 % CI, 12.59–24.70) and wave 2 (IRR, 4.95; 95 % CI, 3.23–7.60). COVID-19 infections and hospitalizations were more likely among residents aged 65+ and in group homes with 6+ resident beds and recent infection among staff and residents. ConclusionsAggressive efforts to decrease resident density, staff-to-resident ratios, and staff infections through efforts such as vaccination, in addition to ongoing access to personal protective equipment and COVID-19 testing, may reduce COVID-19 and related hospitalizations in people with ID/DD living in group homes.

Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement.

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.

Adult Day Services for People With Intellectual and Developmental Disabilities: A Scoping Review.

Adult day services (ADS) are therapeutic, social, and health-related activities that keep people in their homes, rather than institutional settings. While there is a growing body of literature on ADS for older adults, there is far less information available about ADS for younger adults with intellectual and/or developmental disabilities (IDDs). Researchers conducted a scoping review of 6 databases (892 total articles). After applying inclusion and exclusion criteria, 74 full articles were reviewed, with 10 articles meeting study requirements. The research team found the literature is limited to simple descriptive reports or interventions that use ADS as a platform. Simply put, we know very little about the services provided to younger adults with IDD in ADS. Implications for future research are discussed, including the need to catalog the services offered in ADS for younger adults with IDD and to evaluate their impact on participant well-being.

Impact of income and financial subsidies on oral health care utilization among persons with disabilities in Singapore.

Globally, studies have shown that the dental disease burden among persons with intellectual and/or developmental disabilities (IDD) is high and can be attributed to lower utilization levels of dental services. The aim of the study was to assess the influence of income and financial subsidies on the utilization of dental care services among persons with IDD in Singapore. Between August 2020 and August 2021, a cross-sectional study was conducted via centres offering Early Intervention Programme for Infants and Children, special education schools and adult associations in Singapore serving persons with IDD. A sample of 591 caregivers of children and adults with IDD completed the survey. Data on sociodemographic information, oral health behaviours and dental utilization were collected. Financial subsidy status was assessed by the uptake of a government-funded, opt-in Community Health Assist Scheme (CHAS) for low-income families that provided a fixed subsidy amount for dental services in the primary care setting. Statistical analysis was carried out using univariable, multiple logistic regression and modified Poisson regression. Propensity score matching was carried out in R version 4.0.2 to assess the impact of financial subsidies on oral health care utilization among persons with IDD. Compared to those with lower gross monthly household incomes, the adjusted prevalence ratios of having at least one dental visit in the past year, having at least one preventive dental visit in the past year, and visiting the dentist at least once a year for persons with IDD with gross monthly household incomes of above SGD$4000 were 1.28 (95% CI 1.08-1.52), 1.48 (95% CI 1.14-1.92) and 1.36 (95% CI 1.09-1.70), respectively. Among those who were eligible for CHAS Blue subsidies (247 participants), 160 (62.0%) took up the CHAS Blue scheme and 96 (35.4%) visited the dentist at least yearly. There was no statistically significant difference in the utilization of dental services among individuals enrolled in the CHAS Blue subsidy scheme among those eligible for CHAS Blue subsidies. Higher household income was associated with a higher prevalence of dental visits in the past year, preventive dental visits in the past year, and at least yearly dental visits. CHAS Blue subsidies alone had limited impact on dental utilization among persons with IDD who were eligible for subsidies.

Examining Experiences of Campus Recreation Staff Who Serve College Students With Intellectual and/or Developmental Disabilities (IDD): A Special Olympics Unified Sports® Study

Recreation and sports participation can produce social health benefits for college students with intellectual and/or developmental disabilities (IDD). Despite growing numbers of college students with IDD on college campuses, literature exploring inclusion within campus recreation is limited. To understand the inclusion, or lack thereof, of college students with IDD in campus recreation, experiences and attitudes of campus recreation staff ( N = 24) were examined. A mixed methods study design, including web-based surveys and semi-structured interviews was used to collect data from participants at three North American universities. Results of Multivariate Analysis of Variance and thematic analysis revealed successes, challenges, and barriers among campus recreation staff for implementing inclusion. A significant difference in perception of campus as being more inclusive between the university with Unified Sports affiliated with Special Olympics club and the university with Unified Sports affiliated with the university was also identified. Lastly, resources and strategies for inclusion were revealed as a need.

Transition in epilepsy – A pilot study with patients in and outside of academic centers

RationaleEpilepsy is a complex condition and seizures are only one part of this disease. The move from pediatric to adult healthcare system proves difficult for many adolescents with epilepsy and their families. The challenges increase when patients have epilepsies associated with intellectual and/or developmental disabilities, autism spectrum disorder, and motor disorders. Knowledge and system gaps may exist between the two systems, adding to the challenges. The main goal of this study is to understand the perception of patients with epilepsy and their families who were preparing to move from pediatric to adult healthcare system or had already moved. MethodsA survey was distributed to patients/caregivers of patients with epilepsy through patient support groups in North America and in-person through the 2019 Epilepsy Awareness Day at Disneyland. Patients were required to be 12 years or older at the time of the survey and were divided into two groups: those between 12 and 17 years and those 18 years or older. Caregivers answered on behalf of patients who were unable to respond (e.g., intellectual disability). Major components of the survey included demographics, epilepsy details, quality and access to care received in pediatric and adult years, and questions regarding transition and readiness. ResultsResponses were received from 58 patients/caregivers of patients with epilepsy from Canada and the United States. In group A (patients between 12 and 17 years), none of the 17-year-old patients were spoken to about transition. Patients (caregivers) with epilepsy and intellectual and/or developmental disabilities (IDD) had less time to discuss important things during the transition/transfer phase than patients with normal intelligence. Finally, there was a statistically significant difference observed in access to specialty care reported in the adult years, compared to the years in the pediatric system.In the group B (patients 18 years and older) a) 35 % still visit their family doctor for epilepsy related treatment despite the majority being on 2 or more antiseizure medications (ASMs); b) 27 % of patients in this group were still being followed by their pediatric neurologist; c) one patient received care only through visits to the emergency department; d) only 4 % felt that they received clear instructions during transfer of care such as knowing the name of the adult healthcare practitioner and/or the name of the care institution they were being transferred to. ConclusionsThis study highlights the lack of appropriate transition to adult healthcare system (AHCS) amongst an unselected group of patients with epilepsy in Canada and United States. An overwhelming majority of patients followed in the community and in academy centers were simply “transferred” to an adult health practitioner, or they remained under the care of pediatricians. Finally, most patients lack access to significant social and medical support after moving to the AHCS.

What is known about the application of trauma-informed care within services for people with intellectual and/or development disabilities?

Trauma-informed care (TIC) is gaining momentum in various health, social, and educational settings globally in response to the widespread pervasiveness of adverse experiences and resultant psychological trauma. Given that people with intellectual and/or developmental disabilities (IDD) are more likely to experience traumatic life events than the general population, it makes sense that TIC should be in place within services supporting individuals with IDD. Yet there is a dearth of empirical research exploring the integration of TIC in such organisations and the spread of limited available literature is diverse. Thus, this paper aimed to scope and synthesise the emerging literature to elucidate what is known -regarding TIC in the context of IDD. A scoping review was conducted using the Arksey & O’Malley (2005) guidelines. Three databases, PsycINFO, Web of Science, and PubMed, were searched using relevant search terms to retrieve 69 papers published since 2000, which were systematically screened for eligibility. Twenty-three papers comprising a range of source types met inclusion criteria and were reviewed rigorously, with included empirical studies appraised using the mixed methods appraisal tool (MMAT; Hong et al., 2018). The PAGER framework (Bradbury-Jones et al., 2022) was followed to generate four patterns from the findings: (1) Opportunities for Embedding TIC within IDD Contexts, (2) Incorporating TIC Principles into Specific IDD Service Models, (3) Implementing TIC across Micro, Meso, and Macro Levels, and (4) Challenges and Barriers to Implementing TIC in IDD Organisations. There is a growing body of literature exploring the implementation of TIC within IDD organisations, including newly emerging TIC training programmes for staff. Yet there remains a lack of empirical implementation research examining outcomes for service providers and recipients. Tentative evidence for clinical practice and research recommendations from each pattern of findings are discussed, along with strengths and limitations of this review.

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.

BEhavioral Health Stratified Treatment (B.E.S.T.) to optimize transition to adulthood for youth with intellectual and/or developmental disabilities

Youth with intellectual and/or developmental disabilities (IDD) often struggle with depression and anxiety, which adversely impacts transition to adulthood. Integrated behavioral health care coordination, wherein care coordinators and behavioral health specialists collaborate to provide systematic, cost-effective, patient-centered care, is a promising strategy to improve access to behavioral health services and address factors that impact transition to adulthood, including depression/anxiety symptoms. Current care coordination models (e.g., Title V Maternal and Child Health Bureau [MCHB]) do not include behavioral health services. The CHECK (Coordinated HealthCarE for Complex Kids) mental health model, hereby refined and renamed BEhavioral Health Stratified Treatment (B.E.S.T.), is a behavioral health intervention delivery program designed for integration into care coordination programs. This study aims to determine whether an integrated behavioral health care coordination strategy (i.e., MCHB care coordination plus B.E.S.T.) would be more acceptable and lead to better youth health and transition outcomes, relative to standard care coordination (i.e., MCHB care coordination alone). Results would guide future investment in improving outcomes for youth with IDD.This study is a two-arm randomized clinical trial of 780 transition-aged youth with IDD (13–20 years) to evaluate the comparable efficacy of MCHB Care Coordination alone vs. MCHB Care Coordination plus B.E.S.T. on the following outcomes: 1) decreased symptoms and episodes of depression and anxiety over time; 2) improved health behaviors, adaptive functioning and health related quality of life; 3) increased health care transition (HCT) readiness; and 4) improved engagement and satisfaction with care coordination among stakeholders.

Interprofessional Approach to Educate Health Care Students About Intellectual and Developmental Disabilities: Adaptive Communication and Physical Activity Planning.

People with intellectual and/or developmental disabilities (IDD) are a historically marginalized population and often require complex team-based health care services. Health care students receive little, if any, training about caring for this population. Improving training at the student level can improve health care quality for this population. We developed a two-part interprofessional seminar series to increase students' knowledge, attitudes, and skills regarding caring for patients with IDD. The seminars were taught over Zoom and utilized presentation slides, prerecorded mock video interviews, and breakout room discussions focused on adaptive communication and developing adaptive physical activity plans for people with IDD. Participants comprised undergraduate and graduate students from various health care professional programs, including occupational therapy, medicine, and nursing. Part 1 had 208 participants, and part 2 had 107 participants. Both seminars were assessed using pre- and postsurveys that demonstrated increased participant comfort and confidence with the respective subjects. Competence of learned skills was not assessed. Participants in both seminars felt they would benefit from more direct interaction with people with IDD to practice learned skills. The results are encouraging for continued implementation at Quinnipiac University, with potential for use in other programs. Further iterations may include people with IDD serving as seminar cofacilitators, opportunities for students to directly interact with people with IDD, and use of an assessment approach evaluating learned skills competence. Curriculum expansion should cover the unique health care inequities faced by people with IDD who also belong to other marginalized groups.

Education Research: Predictors of Resident Physician Comfort With Individuals With Intellectual and Developmental Disabilities: A Cross-sectional Study.

Individuals with intellectual and/or developmental disabilities (IDD) experience worse health outcomes compared with peers without a disability partly due to difficulties accessing age-appropriate health care. Provider discomfort with interacting and caring for individuals with IDD is a primary barrier to accessing care. The objectives of this study were to describe resident physicians' education, experiences, and comfort levels regarding individuals with IDD and to identify predictors of higher comfort levels with this patient population. In this cross-sectional study, we surveyed medical trainees in 7 residency programs in Boston, Massachusetts on their education, experiences, and comfort levels regarding individuals with IDD. The comfort level was assessed directly on a 6-point Likert scale. The relationship between comfort regarding people with IDD and several candidate explanatory variables was explored with Spearman and partial Spearman correlations (r s). The estimated survey response rate was 49%. Of 423 resident physicians included in the study, 96% reported they had treated a patient with IDD, while only 25% reported having formal education on caring for this population. On a scale of 1-6, with higher numbers corresponding to greater comfort, the mean comfort level treating individuals with IDD was 3.73 (CI 3.61-3.85). In bivariant analyses, the amount of prior experience with people with IDD had a moderate, positive correlation with increased comfort levels treating individuals with IDD (r s = 0.42, p < 0.01). The following characteristics had a weak, positive correlation with increased comfort levels: training in a pediatric-focused residency specialty (r s = 0.18, p < 0.01), number of hours of formal education on caring for people with IDD (r s = 0.15, p < 0.01), and age (r s = 0.12, p = 0.03). Only the amount of prior experience with this patient population remained positively correlated with higher comfort levels when the other variables were controlled for (r s = 0.38, p < 0.01). Prior experience with individuals with IDD predicted higher comfort levels with this population. This study supports the need for increased opportunities for medical trainees to engage with people with IDD to improve resident physicians' comfort caring for this patient population.

Provision of Home-Based Primary Care to Individuals With Intellectual and/or Developmental Disability Is Associated With a Lower Hospitalization Rate Than a Traditional Primary Care Model.

The objective of this study was to determine if providing home-based primary care (HBPC) to individuals with intellectual and/or developmental disabilities (IDD) was associated with a lower hospitalization rate than a control group receiving traditional primary care. Individuals with IDD living in supported residential settings in Ohio were offered HBPC. Individuals electing HBPC made up the intervention group. Those who did not opt for HBPC continued to receive traditional primary care services and made up the control group. Hospitalizations were tracked in both groups. The 757 study participants had IDD diagnoses and received residential support services throughout the study period. Annualized hospitalization rate was determined in both groups and was compared using generalized estimating equations while controlling for patients' age and hospitalization rate in the year prior to the study. The results showed that group membership had a significant effect on the hospitalization rate (Wald χ2= 20.71, P < .01). Being in the control group was associated with a 2.12-fold increase in annual hospitalization rate for a given patient. The overall population hospitalization rate was 329 hospitalizations per 1000 per year in the HBPC-receiving individuals and 619 hospitalizations per 1000 per year in the control group. We found that individuals with IDD receiving HBPC were hospitalized at a lower rate than a control group receiving traditional primary care. Expanding access to HBPC may be a worthwhile priority for organizations that support individuals with IDD.

Documenting the advocacy experiences among eight Latina mothers of children with intellectual and developmental disabilities

AbstractInternationally, it has been recognized that parent involvement is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD). Parent involvement often includes parents advocating for their children. However, many parents face barriers when advocating to obtain appropriate special education services for their children with IDD. In the United States, Latinx families face greater systemic barriers (e.g., language and cultural differences) to access services for their own children with IDD. To this end, parents may turn to parent advocacy training programs to learn about special education and feel empowered to advocate for school services for their own children and other families of children with disabilities. Yet, it is unclear how Latinx families advocate for services for their own children and for other Latinx families of children with disabilities after attending an advocacy program. We designed a study to explore the advocacy experiences of eight Latinx families one year after attending an advocacy program. Participants reported that they used three advocacy strategies when advocating for their own children with disabilities: knowledge of special education law, non‐adversarial advocacy strategies, and requests for data. Notably, some participants reported not having an advocacy experience due to the COVID‐19 pandemic. Implications for research and practice are discussed.

Examining Therapeutic Recreation Service Delivery for Adults with Intellectual and/or Developmental Disabilities in Community-Based Settings

With there being a nine-and-a-half percent increase in prevalence of intellectual and/or developmental disabilities (IDD) among children in the U.S. over nine years (i.e., 2009-2017; Zablotsky et al., 2019), the number of adults with IDD in our communities is growing and there is great potential for CTRS to produce multi-level and influential opportunities, outcomes, and benefits for adults with IDD through therapeutic recreation (TR) services in community-based settings. However, community-based settings is not a well-represented employment setting among CTRSs in the U.S. This mixed methods study aimed to identify best practices, barriers, and facilitators CTRSs experience when providing TR services to adults with IDD in community-based settings, as well as to examine how COVID has impacted TR service delivery and ideas for future provision of virtual TR services among these CTRSs. A total of 278 CTRSs across the country who work with adults with IDD in community-based settings completed a Qualtrics survey and 15 of these CTRS completed a follow-up, individual interview. Integrated data analysis revealed widespread impacts of COVID, lack of use of evidence-based practice, lack of involvement in evidence-based practice research, and need for standardized assessment and use of evidence-based practice to increase billing for TR services. Important implications for TR service delivery among adults with IDD in community-based settings were revealed, as well as directions for future research.

Virtual Reality among Individuals with Intellectual and/or Developmental Disabilities: A Systematic Literature Review

With the capability of virtual reality (VR) interventions outside the field of therapeutic recreation to produce meaningful outcomes in various domains for individuals with varying disabilities, it would be valuable to establish VR as an evidence-based therapeutic recreation practice that could greatly benefit individuals with intellectual and/or developmental disabilities (IDD). This systematic literature review explores VR evidence-based practices with individuals with IDD in various fields. Twenty-two databases were searched in October 2020, and 32 articles were reviewed. Thematic topics included: VR increases skills; VR motivates; VR to support traditional services; most effective types of VR; suitability and accessibility of VR; complimentary support for VR implementation and successful engagement; VR challenges, lessons learned, and needed improvements; and full potential of VR not yet realized. Results revealed a variety of implications and future recommendations that support future research to test VR with individuals with IDD and establish evidence-based therapeutic recreation practice.

Perceived stress moderates the relationship between family support and family quality of life among parents of children living with intellectual and developmental disabilities

AbstractIn Nigeria, the prevalence of intellectual and/or developmental disabilities (IDD) is relatively high, and there is no harmonized national policy to subsidize care and to assist families in caring for their children living with IDD. Thus, the increased stress seems to affect psychological and physiological health and puts social and economic pressures on families managing the care needs of their children living with IDD. A high level of family support has been shown to positively affect the family quality of life (FQOL) of individuals with IDD and their family members. Perceived stress may affect the quality of life of parents of children with IDD. What is not clear is how perceived stress can moderate the relationship between family support and FQOL. The present study examined whether perceived stress moderates the relationship between family support and quality of life (FQOL) among 129 parents of children living with IDD. These participants were selected from a daycare school located in Enugu state, Nigeria. They consisted of 95 women and 34 men who were within the age range of 30–55 years, with a M age of 40.16 years and a SD of 9.11. Three sets of instruments were employed for data collection. The results of moderated regression analysis revealed that family support positively predicted FQOL. Perceived stress negatively predicted FQOL. Similarly, perceived stress moderated the relationship between family support and FQOL. Our findings highlight the importance interventions that target stress as a risk factor that may lead to low FQOL and family support as a protective factor that decreases the negative effect of perceived stress on FQOL. Creating interventions and policies that support adequate family support for parents caring for children with IDD may promote their FQOL.

Examining Campus Recreation and Sports Experiences of College Students with Intellectual and/or Developmental Disabilities (IDD) and Attitudes of College Students Without IDD: A Special Olympics Unified Sports® Study

Recreation and sports participation can produce social health benefits for college students with intellectual and/or developmental disabilities (IDD). Despite growing numbers of college students with IDD on college campuses, literature exploring inclusion within campus recreation and sports is limited. To understand how students with IDD have been, desire to be, and can be meaningfully included in campus recreation and sports, experiences of students with IDD (N = 33), and the experiences and attitudes of students without IDD (N = 260) were examined. A mixed methods study design, including web-based surveys and semi-structured interviews, was used to collect data from participants at three American universities. Results of Analysis of Variance (ANOVA) and thematic analysis revealed a critical need to examine these students’ inclusion within campus life at large.

Changes in community and hospital-based health care use during the COVID-19 pandemic for adults with and without intellectual and developmental disabilities.

BackgroundDue to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID‐19 pandemic may impact people with IDD differently than others. For community and hospital‐based services, this study describes the proportion of adults with and without IDD who used health care in the year pre‐COVID‐19 and the first year of the pandemic.MethodsThis retrospective cohort study used linked health administrative databases to identify adults aged 18–105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre‐COVID‐19 year (16 March 2019 to 14 March 2020) and the first COVID‐19 year (15 March 2020 to 15 March 2021).ResultsAcross services, the proportion of adults who used services was lower during the first COVID‐19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic.ConclusionsDuring the first COVID‐19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.

A Socio-Ecological Approach to Understanding the Perinatal Care Experiences of People with Intellectual and/or Developmental Disabilities in Ontario, Canada.

Accessible and quality care during the perinatal period is critical for optimal maternal and neonatal health. Using the socio-ecological model, the purpose of this study was to explore barriers and facilitators that shape the perinatal care experiences of people with intellectual and/or developmental disabilities (IDD). Semi-structured interviews were conducted with 10 individuals with IDD in Ontario, Canada, who had given birth within the past 5years. Interviews focused on care experiences before, during, and after pregnancy. Data were analyzed using a directed content analysis approach, and the socio-ecological model guided analysis. Barriers at the societal (e.g., cultural norms of motherhood), policy/institutional (e.g., child protection policies and practices), interpersonal (e.g., inadequate formal and informal support), and intrapersonal levels (e.g., internalized stigma) contributed to participants having negative perinatal care experiences. Conversely, we identified facilitators on the interpersonal level (e.g., positive interactions with perinatal care providers and familial and social service supports) as positively shaping participants' perinatal care experiences. Findings reveal that the perinatal care experiences of people with IDD are shaped by several interrelated factors that largely stem from societal-level barriers, such as dominant (stigmatizing) discourses of disability. To improve the perinatal care experiences of people with IDD, there is a need for interventions at multiple levels. These include the development of policies to support perinatal care for diverse populations and training care providers to enact policies at the institutional and interpersonal levels.