H-CARDD Snapshots are concise two page summaries highlighting the key aspects of H-CARDD research findings or projects. These snapshots offer a brief overview of each project describing what the research is about, what the researchers did, and why it is important.
Easy Reads are documents that present information using plain language with larger text, graphics, and images to make the information more accessible and even easier to understand. Our Easy Reads are developed at the Azrieli Adult Neurodevelopmental Centre together with advisors with developmental disabilities.
ALC Project
Long-Stay Patients in Ontario Mental Health Beds with Developmental Disabilities NEW!
What you need to know: In Ontario, more than one in four long-stay patients in mental health beds have a developmental disability, often facing considerable challenges when it comes to discharge. These barriers can lead to extended hospitalizations, which impact not only their well-being but also access to care for other patients. To support their transition to suitable community settings and prevent prolonged stays, intersectoral collaboration is essential, ensuring these individuals receive the care and stability they need outside the hospital environment.
CIHR COVID Project to Support Mental Health
What you need to know: Self-advocates, caregivers, and service providers participated in virtual education courses targeting the mental health of adults with developmental disabilities (DD) during COVID-19. Participation and satisfaction rates were high, and participants reported improved knowledge and self-efficacy with regard to supporting and managing mental health. Our study demonstrated the value and feasibility of virtual learning and the creation of communities of practice.
Snapshots from the Criminal Justice and Developmental Disabilities Project
What you need to know: The prevalence of developmental disabilities (DD) in federal correctional institutions is two times that reported in the general population. People with DD in Ontario serving sentences of two or more years had substantial health concerns, and higher hospitalizations and emergency department visits post-release than people without DD. They served more days in custody and were more likely to incur serious in-prison disciplinary charges compared to people without DD.
What you need to know: Individuals with developmental disabilities (DD) are overrepresented in forensic inpatient settings and may use these settings more intensively than individuals without DD. This study found that almost 1 in 5 adults in forensic inpatient beds have a developmental disability, a number that is nearly 17 times higher than for the general population. Adults with DD, compared to those without DD use more forensic inpatient services – they have more frequent admissions, longer hospital stays, and remain in hospital even after they are ready for discharge.
What you need to know: The percentage of people with developmental disabilities (DD) in the provincial correctional population is nearly three times higher than the percentage in the rest of the community. Compared to people with no DD, incarcerated people with DD are more likely to have physical and mental health conditions and have greater health care needs in the year following release from prison.
What you need to know: There is concern that there are many adults with developmental disabilities in the Ontario criminal justice and forensic mental health systems. These individuals have many physical and mental health issues and use high rates of health care. More attention is needed on how best to support these individuals before, during and after involvement with the criminal justice and forensic mental health systems.
Snapshots from the Nuts and Bolts of Health Care Project
What you need to know: Direct Support Professionals (DSPs) play a key role in supporting adults with developmental disabilities (DD) to manage their health. Researchers worked collaboratively with DSPs to create a set of tools, videos, and resources that can be incorporated into routine practice. The Nuts and Bolts Toolkit is available to help DSPs be more effective health care advocates for people with DD. Learn more about the Nuts and Bolts project.
Snapshot from 2019 H-CARDD Report
What you need to know: This study found that autistic males and females were over three times more likely to die prematurely (before age 75) than those of the same age without autism. They were less likely to die prematurely than same age adults with other developmental disabilities were. We need to do more to improve health and social care for autistic males and females, and those with other developmental disabilities, to allow them to live long and healthy lives.
What you need to know: Compared to adults without intellectual and developmental disabilities (IDD), adults with IDD consistently fared worse across five important health outcomes. The poorer outcomes for adults with IDD, particularly those with both IDD and mental health/addictions disorders, suggest a need for a more comprehensive, system-wide approach spanning health, disability, and social support.
What you need to know: Compared to adults without DD, adults with DD consistently fared worse across five important health outcomes. This pattern held true regardless of age, sex, neighbourhood where they lived or the kind of developmental disability they had. The pattern of poor outcomes differed depending on the type of developmental disability (Down syndrome, autism, mental health and/ or addictions diagnosis).
Snapshots from the Atlas of Primary Care of Adults With Developmental Disabilities
What you need to know: The H-CARDD Program’s resource, The Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario offers for the first time a picture of the health and health care of adults with developmental disabilities in the province.
What you need to know: The H-CARDD Program’s Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario, describes a cohort of 66,484 individuals with developmental disabilities, representing a prevalence rate of 0.78%. Policy and planning efforts should focus on those living in the poorest neighborhoods and those with higher rates of diseases.
What you need to know: Similar to the general population, about three quarters of adults with developmental disabilities see family physicians. They are, however, more likely to visit emergency departments and be hospitalized. Primary care providers and specialists need to be aware of the vulnerability of this population.
What you need to know: Adults with developmental disabilities in Ontario are a vulnerable population. They have higher rates of health problems and yet they are less likely than others to get preventive care—including the periodic health examination and screening for colorectal, breast, and cervical cancers.
What you need to know: Adults with developmental disabilities have higher rates of chronic disease than those without developmental disabilities and yet they are receiving inadequate chronic disease management in many areas. More work is needed to avoid the complications of disease and to improve the quality of life for this vulnerable population.
What you need to know: Adults with developmental disabilities are dispensed many medications, which puts them at risk for adverse effects. These adults and their caregivers need to be educated on how to use medications and monitor their side-effects. Adopting clinical guidelines is strongly encouraged: indication, dosage and effectiveness of all medications should be reviewed every three months.
Snapshots from H-CARDD research on vulnerable subgroups
What you need to know: The prevalence of HIV infection in individuals with developmental disabilities is comparable to the rates of inflection in individuals without developmental disabilities. This highlights the need for HIV prevention strategies targeted towards this population.
What you need to know: Adults with developmental disabilities experience early onset of aging, and access home care and long-term care earlier. They need timely access to appropriate aging care services.
What you need to know: Individuals with developmental disabilities who also have a mental illness or addiction are a sizeable and highly vulnerable group. Intensive outpatient supports and better care coordination are needed for this population.
- Study examines health and health service use of young adults with autism and developmental disabilities / French
What you need to know: Young adults with developmental disabilities are more likely to have poorer overall health, have at least one psychiatric diagnosis and have higher health service use than young adults without developmental disabilities.
What you need to know: This research highlights the importance of using a gender lens when addressing the health and health care of individuals with developmental disabilities. The voices of women with developmental disabilities need to be reflected in Ontario’s women’s health agenda.
What you need to know: This is a large, population-based study that explores differences between women and men with developmental disabilities in relation to side-effects of antipsychotic medications. Gender should be considered in prescribing of antipsychotic medications in this population.
What you need to know: The health needs of pregnant women with developmental disabilities need to be considered. They have higher rates of pregnancy complications than women without developmental disabilities, and their newborns are more likely to be born early, to be smaller than they should be, and to die in the first month of life.
Snapshots from H-CARDD research on health care interventions
What you need to know: Recognizing and communicating information about developmental disabilities in the emergency department is the first step to improving care practices. Hospital staff can improve their approach through education and the use of clinical tools.
What you need to know: “Health Checks” in primary care can have significant positive impacts for individuals with developmental disabilities. With planning and support, primary care practices can implement changes so that patients with developmental disabilities are more likely to receive a Health Check.
Other Snapshots from H-CARDD research
What you need to know: Individuals with developmental disabilities were 1.5 times more likely to visit the emergency department compared to individuals without. Increasing the continuity of primary care patients’ receive may help to reduce emergency department visits more for people with developmental disabilities than for others.
What you need to know: Adults with developmental disabilities are nearly 4 times as likely to incur high annual health care costs compared to those without developmental disabilities. High-cost users were more likely to be female, older, live in group homes, and to be receiving disability income support compared to non-high cost users.
The H-CARDD Snapshot is a modified version of the Research Snapshot template, developed by the Knowledge Mobilization Unit at York University, Toronto. Snapshots are developed based on recent H-CARDD scientific publications and projects, in collaboration with Ontario's Evidence Exchange Network (EENet).
