The role of thriving in mental health among people with intellectual and developmental disabilities during the COVID-19 pandemic in Canada.

BACKGROUND: The COVID-19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic-related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The current study examined the associations among COVID-19 stressors, thriving, and mental health problems among youth and adults with intellectual and developmental disabilities. METHOD: Caregivers of 159 people with intellectual and developmental disabilities between 12 and 35 years of age from Canada completed an online questionnaire. RESULTS: A mediation analysis revealed that COVID-19 stressors were positively associated with mental health problems, and that thriving partially mediated this association. CONCLUSION: Our findings suggest that experiences of thriving may be an important target for mental health support for people with intellectual and developmental disabilities.

Parent Descriptions of the Active Play Behaviors of Their Twins and Triplets With Autism.

Children with autism engage in active play in different ways than children who are neurotypical, but their active play behaviors are not well understood. Research with twins and triplets with autism offers a unique opportunity to gain a clear picture of the play behaviors of children with autism because twins and triplets share many similarities (age, access to toys, etc.). Through semistructured interviews, this descriptive phenomenological study aimed to describe the active play behaviors of 19 twins and triplets with autism from the perspective of their parents (N = 9). The interviews revealed two main themes: (a) parents' descriptions of active play and (b) parents' descriptions of social play. The results reveal the diverse active and social play behaviors of twins and triplets with autism; parents described their children's play behavior when engaging in sensory, indoor, outdoor, and organized play. These results suggest that children with autism may be meeting the definition of active play in nontraditional ways.

Health conditions and service use of autistic women and men: A retrospective population-based case-control study.

LAY ABSTRACT: This study used administrative data from Ontario, Canada to compare the health conditions and service use of autistic women and men with adults with other developmental disabilities and with adults without developmental disabilities. Autistic women and men were more likely to have physical and mental health conditions compared to adults without developmental disabilities. Rates of health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except more autistic adults had psychiatric conditions. Autistic women and men used higher rates of psychiatric services compared to all other groups. When comparing autistic women with same aged autistic men, sex differences were found for specific physical (Crohn's disease/colitis, rheumatoid arthritis) and psychiatric conditions (psychotic disorders, non-psychotic disorders), as well differences in service use (emergency department visits, hospitalizations, family doctor and neurologist visits). These results further highlight the high health needs and service use of autistic women and men, as well as adults with other developmental disabilities. It is critical for future research to focus on mental health support for autistic adults and to better understand how to tailor supports to best serve autistic women.

Young adults with intellectual and developmental disabilities who participate in Special Olympics are less likely to be diagnosed with depression.

PURPOSE: People with intellectual and developmental disabilities (IDD) experience high rates of depression. Evidence indicates that physical activity, or participation in a sports club, in a supportive social environment has mental and physical health benefits. Adults with IDD, on average, engage in low levels of physical activity. The purpose of this study was to compare the rates of depression among young adult Special Olympics participants with IDD compared to non-participants with IDD. METHODS: This was a 20-year retrospective cohort study of young adults (19-29 years) with IDD in the province of Ontario, Canada that compared rates of depression among Special Olympics participants (n = 8710) to non-participants (n = 42,393) using administrative health databases housed at ICES (formerly the Institute for Clinical Evaluative Sciences). Using cox proportional hazard models, the crude hazard ratios were calculated for the association between each independent variable and the dependent variable. RESULTS: After controlling for other variables, the hazard rate for depression among Special Olympics participants compared to the hazard rate for depression among non-participants generated an adjusted hazard ratio of 0.51. Over the 20-year follow-up, the participants were 0.51 times as likely to develop depression as non-participants; this represents a 49% reduction in risk among Special Olympics participants. This result was statistically significant and represents a medium effect size. CONCLUSION: Future research is needed on how much of this risk reduction is related to a physiological response to physical activity/exercise, and how much is related to the social connectedness of being part of a group participating in Special Olympics.

Amenable deaths among adults with intellectual and developmental disabilities including Down syndrome: An Ontario population-based cohort study.

BACKGROUND: Rates of death and avoidable deaths are reportedly higher among people with intellectual and developmental disabilities. This study contributes to our understanding of how mortality and intellectual and development disabilities are associated. METHOD: General population and intellectual and developmental disabilities adult cohorts were defined using linked administrative data. All-cause and amenable deaths between 2010 and 2015 were reported for these cohorts and subcohorts with and without Down syndrome. Cox proportional hazards models evaluated the impact of potential contributors to amenable deaths. RESULTS: Adults with intellectual and developmental disabilities had higher all-cause (6.1 vs. 1.6%) and amenable death percentages (21.4 vs. 14.1%) than general population comparators. Within intellectual and developmental disabilities, those with Down syndrome had higher all-cause (12.0 vs. 6.0%) but lower amenable death percentages (19.2 vs. 21.8%) than those without. CONCLUSIONS: Results suggest that interventions to reduce amenable deaths target provider-care-recipient interactions and coordination across care and support sectors.

Premature mortality in a population-based cohort of autistic adults in Canada.

Research from different countries suggests that autistic adults are more likely to die prematurely than non-autistic adults, but these studies do not always investigate male and female individuals separately and do not consider whether this pattern is unique to autistic people or is also an issue for people with other developmental disabilities. We examined premature mortality in autistic males and females (assigned at birth) in a population-based cohort, compared to males and females with and without other developmental disabilities. Using linked administrative health and social services population data from Ontario, Canada, age-matched males and females aged 19-65 years were followed between 2010 and 2016, and causes of death were determined. Over the 6-year observation period, 330 of 42,607 persons (0.77%) in the group without developmental disabilities had died compared to 259 of 10,646 persons (2.43%) in the autism group and 419 of 10,615 persons (3.95%) in the other developmental disabilities group. Autistic males and females were more likely to die than non-autistic males (adjusted risk ratio, RR 3.13, 95%CI 2.58-3.79) and non-autistic females (adjusted RR 3.12, 95%CI 2.35-4.13) without developmental disabilities, but were less likely to die than adults with other developmental disabilities (males: adjusted RR 0.66, 95%CI 0.55-0.79; females: adjusted RR 0.55, 95%CI 0.43-0.71). Most common causes of death varied depending on a person's sex and diagnosis. Given the greater likelihood of premature mortality in adults with developmental disabilities including autism, greater attention and resources directed toward their health and social care are needed, tailored to their sex and diagnosis-informed needs. LAY SUMMARY: This study looked at how many autistic men and women died over 6 years (2010-2016), along with how they died, and compared this to adults who did not have autism living in Ontario, Canada. It found that autistic men and women were more than three times as likely to die as people of the same age who did not have a developmental disability. However, adults with other developmental disabilities besides autism were even more likely to die than autistic adults. This means that we have to pay more attention and invest in better social and health care for autistic people, along with people who have other types of developmental disabilities.

COVID-19 Vaccination of Individuals with Down Syndrome-Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated.

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 <0.5% of participants. About 1% of the vaccinated individuals with DS contracted COVID-19 after vaccination, and all recovered. Individuals with DS who were unvaccinated by choice were more likely to be younger, previously recovered from COVID-19, and also unvaccinated against other recommended vaccines. COVID-19 vaccines have been shown to be safe for individuals with DS and effective in terms of resulting in minimal breakthrough infections and milder disease outcomes among fully vaccinated individuals with DS.

Matching Special Olympics registration data with administrative health databases: Feasibility and health status differences in children and youth with IDD.

BACKGROUND: Children and youth with intellectual and developmental disabilities (IDD) experience health disparities. What is unknown is if data collected from children and youth with IDD who participate in Special Olympics is representative of children and youth with IDD who do not. OBJECTIVES: Aim 1: determine the feasibility of matching a database of registrants from Special Olympics Ontario (SOO), with population-based health services databases in Ontario, Canada housed at ICES. Aim 2: evaluate the differences between the database sources with regards to demographic variables and clinical status. METHODS: Using deterministic and probabilistic matching, registration data from SOO were matched to administrative health databases. Established algorithms were used to determine the prevalence of asthma, diabetes, and mental disorder in addition to demographic variables. RESULTS: The matching rate was over 90%; 8404 were attributed to children and youth between the ages of 0-19 years. When comparing SOO participants with IDD to non-SOO participants with IDD, children and youth who participate in SOO were, on average, older with no further differences between groups on clinical or demographic variables. When comparing those previously not identified in the health services databases (from SOO) to those with IDD identified by ICES, the SOO participants appear to use the health system less, possibly indicating a better health status. CONCLUSIONS: Research conducted on child and youth who participate in Special Olympics Ontario can be generalized to the broader population of children and youth with IDD in Canada when adjusted for age; however, care should be taken when comparing levels of overall morbidity.

Incidence of injury in children and adolescents with intellectual and developmental disability.

INTRODUCTION: Children and adolescents living with intellectual and developmental disability (IDD) have a higher risk of experiencing morbidities and premature death when compared to children and adolescents living without IDD. Childhood injuries are a leading cause of morbidity and death, yet there are limited studies that explore the prevalence of childhood injuries for individuals living with IDD. The purpose of this study was to analyze Ontario health administrative data to identify and compare rates of injury resulting in hospitalization in children and adolescents living with and without IDD. METHODS: This is a cross-sectional study of all Ontarians aged 0-19 years with and without IDD. The outcome of interest was the rate of injury resulting in hospitalization. RESULTS: This study found that children and adolescents with IDD had 1.79 (CI 1.66, 1.92) times higher rates of both intentional and unintentional injuries that resulted in hospitalization when compared to children and adolescents without IDD. Hospitalizations for self-harm related injuries were 3.16 (CI 3.09, 3.23) times higher in the IDD group. CONCLUSION: Children and adolescents with IDD have a higher risk of sustaining serious injuries, particularly injuries resulting from self-harm. Practical Applications: This study provides evidence of increased injury related hospitalizations for children and adolescents with IDD when compared to their peers without IDD.

Psychiatric disorders in adults with cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is one of the most common neurological conditions in childhood. Individuals with CP often experience various secondary conditions, including intellectual disability (ID), medical conditions, and psychiatric issues. A large number of youth with CP have psychiatric disorders; however, few studies have examined the prevalence of psychiatric issues in adults with CP at the population-level. AIMS: To investigate the prevalence and co-occurrence of psychiatric disorders at the population-level in adults with CP only, and adults with CP and ID. METHOD AND PROCEDURES: Using clinical information from seven Canadian data sources, we conducted a retrospective cross-sectional analysis of adults with CP, with and without ID. OUTCOMES AND RESULTS: Adults with CP were more likely than the general population to have a psychiatric diagnosis, independent of ID status. All psychiatric disorders were more common in individuals with CP than the general population, with the exception of addiction related disorders. In most cases, having an ID substantially increased the risk of having a psychiatric disorder. CONCLUSIONS: Adults with CP are at heightened risk for experiencing psychiatric disorders. Current findings highlight the important role health care providers play in screening for psychiatric issues in individuals with CP.

Health and service use of newcomers and other adults with intellectual and developmental disabilities: A population-based study.

BACKGROUND: This study examines newcomers with intellectual and developmental disabilities compared to other adults with intellectual and developmental disabilities in Ontario, Canada. METHODS: This population-based retrospective cohort study used linked health and social services administrative data to identify adults with intellectual and developmental disabilities as newcomers, or non-newcomers, and compared their health status and health service outcomes. RESULTS: Among those with intellectual and developmental disabilities, compared to non-newcomers, newcomers generally had lower or similar rates of health issues, except for higher rates of psychosis. Newcomers also had slightly greater use of community-based health services, but less hospital use. CONCLUSION: Trends among those with the intellectual and developmental disabilities were consistent with general population trends; newcomers had lower rates of many health issues and lower hospital use. It also underscores the value of understanding drivers of heterogeneity within newcomers, such as the circumstances of admission and settlement in their new country.

Traumatic Brain Injury Incidence in Adults with Intellectual and Developmental Disabilities.

BACKGROUND: In Ontario, there are approximately 66,000 adults living with a diagnosis of intellectual and developmental disabilities (IDD). These individuals are nearly twice as likely to experience an injury compared to the general population. Falls are an important contributor to injuries in persons with IDD and in the general population, and are consistently found to be the leading cause of traumatic brain injury (TBI). There is currently no literature that quantitatively examines TBI among persons with IDD. The purpose of this study was to compare the risk of TBI for adults with and without IDD in Ontario over time and by demographic information. METHODS: Using administrative health databases, two main cohorts were identified: (1) adults with IDD, and (2) a random 10% sample of adults without IDD. Within each cohort, annual crude and adjusted incidence of TBI were calculated among unique individuals for each fiscal year from April 1, 2002 to March 31, 2017. RESULTS: Over the 15-year study period, the average annual adjusted incidence of TBI was approximately 2.8 new cases per 1000 among Ontario adults with IDD, compared to approximately 1.53 per 1000 among those without IDD. In both cohorts, a higher proportion of TBI cases were younger (19-29 years) and male. CONCLUSIONS: During the study period, persons with IDD experienced a significantly higher risk of TBI compared to the general population indicating the possibility, and need, for targeted TBI prevention.

Looking across health and healthcare outcomes for people with intellectual and developmental disabilities and psychiatric disorders: population-based longitudinal study.

BACKGROUND: Intellectual and developmental disabilities (IDDs) and psychiatric disorders frequently co-occur. Although each has been associated with negative outcomes, their combined effect has rarely been studied. AIMS: To examine the likelihood of five negative health and healthcare outcomes for adults with IDD and mental health/addiction disorders (MHAs), both separately and together. For each outcome, demographic, clinical and system-level factors were also examined. METHOD: Linked administrative data-sets were used to identify adults in Ontario, Canada, with IDD and MHA (n = 29 476), IDD-only (n = 35 223) and MHA-only (n = 727 591). Five outcomes (30-day readmission, 30-day repeat ED visit, delayed discharge, long-term care admission and premature mortality) were examined by logistic regression models with generalised estimating equation or survival analyses. For each outcome, crude (disorder groups only) and complete (adding biosocial covariates) models were run using a general population reference group. RESULTS: The IDD and MHA group had the highest proportions across outcomes for both crude and complete models. They had the highest adjusted ratios for readmissions (aOR 1.93, 95%CI 1.88-1.99), repeat ED visit (aOR 2.00, 95%CI 1.98-2.02) and long-term care admission (aHR 12.19, 95%CI 10.84-13.71). For delayed discharge, the IDD and MHA and IDD-only groups had similar results (aOR 2.00 (95%CI 1.90-2.11) and 2.21 (95%CI 2.07-2.36). For premature mortality, the adjusted ratios were similar for all groups. CONCLUSIONS: Poorer outcomes for adults with IDD, particularly those with MHA, suggest a need for a comprehensive, system-wide approach spanning health, disability and social support.

Preventing and Treating Diabetes in Canadian Adults With Intellectual and Developmental Disabilities.

Despite emerging evidence that individuals with intellectual and developmental disabilities (IDD) have a high prevalence of diabetes, Canada does not have a strategy to address diabetes in this population. The aim of this review was to review effective health policies and practices to improve diabetes prevention and management developed by other jurisdictions in response to the high prevalence of diabetes among individuals with IDD. To do so, a narrative literature review was conducted based on 18 studies, in addition to 3 examples of resources, 2 systematic reviews, the Canadian diabetes guidelines, the UK diabetes guidelines and Kachika's "NHS RightCare Pathway" report. Consistent with the "Diabetes 360°: A Framework for a Diabetes Strategy for Canada" report, findings were summarized under 3 themes: 1) diabetes prevention and health promotion, 2) diabetes screening and 3) diabetes self-management. We also identified 2 additional areas that cut across all 3 of the themes: 1) diabetes health literacy and 2) role of carers in prevention, screening and treatment efforts. Our review identifies strategies to meet the unique needs of people with IDD who have diabetes, in order to encourage Canadian initiatives to address these needs.

Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research.

Data linkage holds great promise for generating new information about people with intellectual and developmental disabilities (IDD) as a population, yet few centers have developed the infrastructure to utilize this methodology. Two examples, from Canada and Australia, describe their efforts in building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research. The value of data linkage is illustrated through new estimates of prevalence of IDD; health service utilization patterns; associations with sociodemographic characteristics, and with physical and mental health conditions (e.g., chronic diseases, injury, fertility, and depression); and findings on equity in medical treatments. Examples are provided of findings used for governmental policy and program planning.

Prevalence of intellectual and developmental disabilities among first generation adult newcomers, and the health and health service use of this group: A retrospective cohort study.

BACKGROUND: Attention 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. METHODS: This 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. RESULTS: Prevalence of IDD was lower in newcomers than non-newcomers (171.6 versus 898.3 per 100,000 adults, p<0.0001). Among newcomers, those with IDD were more likely than those without IDD to have comorbid physical health disorders, non-psychotic, psychotic and substance use disorders. Newcomers with IDD were also more likely to have psychiatry visits, and frequent emergency department visits and hospitalizations. CONCLUSION: First 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.

Repeat Emergency Department Visits for Individuals With Intellectual and Developmental Disabilities and Psychiatric Disorders.

Although individuals with intellectual and developmental disabilities (IDD) and psychiatric concerns are more likely than others to visit hospital emergency departments (EDs), the frequency of their returns to the ED within a short time is unknown. In this population-based study we examined the likelihood of this group returning to the ED within 30 days of discharge and described these visits for individuals with IDD + psychiatric disorders (n = 3,275), and persons with IDD only (n = 1,944) compared to persons with psychiatric disorders only (n = 41,532). Individuals with IDD + psychiatric disorders, and individuals with IDD alone were more likely to make 30-day repeat ED visits. Improving hospital care and postdischarge community linkages may reduce 30-day returns to the ED among adults with IDD.

Spinal cord injury rehabilitation and pressure ulcer prevention after the 2005 South Asian Earthquake: a CBR case study from Pakistan.

BACKGROUND: The 2005 South Asian earthquake led to large-scale injuries and disabilities in northern Pakistan, which were dealt with using various approaches. In this regard, a community-based rehabilitation approach was initiated in the Muzaffarabad district of Pakistan in early 2006, focused on preventing complications among persons with Spinal Cord Injury. This case study briefly describes its development, aims and service provision components, in addition to the distribution of injuries from the disaster. Pressure ulcer prevention education, its recall and decrease in prevalence over a year are presented as key outcomes and illuminate the process of implementing rehabilitation in this context. METHODS: This case study presents findings from a larger internal program evaluation in 2010-11. The study design was cross-sectional, to elicit recall of education components and the resulting prevalence of pressure ulcers over the year, in 33 randomly selected persons with Spinal Cord Injury. Outcomes included retention of knowledge about pressure ulcer prevention, practices and reduction in the prevalence of pressure ulcers over the last year. We also conducted a narrative literature review on the types of injuries and complications in the Spinal Cord population from Northern Pakistan. RESULTS: Hospital cohort studies reported "spine" injuries at 5%, while persons with spinal cord injury were identified as the most underserved needing rehabilitation services after the quake. Results from the evaluation of prevention education revealed that all 33 respondents were trained in detection of pressure ulcers, while 32 recalled "danger signs" for which they would seek immediate help. All correctly recalled postural change timings, however, their actual practices differed. Twenty-seven respondents (82%) reported no pressure ulcers over the last year. CONCLUSION: The decrease in pressure ulcer prevalence over the last year in persons with spinal cord injury highlights the strengths of the community-based rehabilitation approach, particularly preventive education in geographically challenging and highly resource constrained settings. The research also begins to fill a critical gap in the present literature as most research is limited to hospital based interventions from the first year of the 2005 earthquake. Implications for Rehabilitation Prevention education for targeting pressure ulcers can be effective in reducing incidence of this important complication in persons with spinal cord injury. Community-based rehabilitation approaches can prove beneficial in post-disaster settings, especially in resource constrained settings and difficult hilly terrain. Rehabilitation programs should consider nutrition interventions to reduce multiple pressure ulcers, especially in lower middle income countries.

Patterns of mortality among adults with intellectual and developmental disabilities in Ontario.

OBJECTIVES: To determine recent mortality rates among Ontarian adults with intellectual and developmental disabilities (IDDs) and investigate changes over time in contrast to the general population. To determine the most commonly reported underlying causes of death and explore related coding practices. METHODS: Using linked health administrative data, four cohorts of adults with IDD aged 25-99 living in Ontario were followed for 1 year (one cohort for each year between 2011 and 2014). Deaths (2011 to 2014) and causes of death (2011 to 2013) were identified, and age-standardized mortality rates were calculated annually. For 2013, overall and sex-specific standardized mortality ratios (SMRs) were calculated. Mortality ratios were also examined across 5-year age groups. Commonly reported causes of death were tabulated by ICD-10 chapter, differences by sex examined, and cause-specific SMRs calculated. All deaths with IDD diagnostic codes reported as underlying cause of death were identified. RESULTS: Mortality rates among individuals with IDD have been decreasing over time; in 2014, the mortality rate was 22.6 deaths per 1000 person-years. Disparities in mortality rates relative to the general population decreased with increasing age. Men with IDD had higher mortality rates than women with IDD. The most common causes of death among individuals with IDD were cardiovascular disease, neoplasms, and diseases of the respiratory system. An IDD diagnostic code was reported as cause of death in 3.8% of cases. CONCLUSIONS: The ongoing excess mortality among Ontarians with IDD should be closely monitored by policy makers and service providers. Attention to cause of death reporting should be considered so that cause of death can be thoroughly examined.

The Mental Health of Adults with Developmental Disabilities in Ontario: Lessons from Administrative Health Data.

Adults with developmental disabilities have increased rates of mental illness and addiction, in addition to being more likely to experience physical health issues. This can lead to high rates of hospital and community-based healthcare. Population-based administrative health data can help in identifying the extent of problems experienced and target areas for policy and practice changes.