Successful Strategies for Building a Shared Understanding Between Intellectual and Developmental Disorders Providers, Patients, and Families About Identifying and Treating Mental Health Concerns

Objectives: The objective is to evaluate the impact of a cross-Canada effort to help patients, family caregivers, and intellectual development disorder (IDD) health and social service providers to address mental health needs of people with IDD during COVID-19. Method(s): Various point-of-care tools and clinical resources explaining contributors to mental health difficulties, healthcare communication, and strategies to address mental health concerns were adapted to the 3 audiences of patients, families, and service providers and taught during virtual courses offered to these 3 audiences in the first year of the pandemic. Result(s): Learners reported feeling more comfortable with healthcare communication and understanding mental health difficulties and treatment following their participation in the virtual courses. A common understanding of issues can help to build capacity within the system. Conclusion(s): Everyone has a role to play when it comes to recognizing and addressing mental health concerns. This can be facilitated through the promotion of tailored toolkits and resources, and through the co-delivery of material by people with disabilities, families, and mental health service providers. ADV, ASD, ID Copyright © 2022

Mental health and COVID-19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic has significantly impacted family caregivers of adults with intellectual and developmental disabilities (IDD). This study evaluated a virtual course for family caregivers from across Canada, focused on supporting the mental health and well-being of adults with IDD and their families. The evaluation examined the feasibility and acceptability of the course, as well as the impact of the intervention on participants' overall health and well-being. METHODS: The 6-week virtual course, informed by a parallel Extension for Community Healthcare Outcomes (ECHO) course for service providers, combined didactic instruction with applied activities. A total of 126 family caregiver course participants consented to be part of the research evaluation delivered over three cycles between October 2020 and April 2021. Attendance was measured at each weekly session. Satisfaction was assessed weekly and post-program. Learning, self-efficacy, and well-being were assessed pre- and post-course, and again at follow-up (8 weeks post-course). Mixed-effects models assessed changes between and within individuals across time. RESULTS: Participants had consistent attendance, low-dropout rates, and reported high satisfaction, with 93% of participants reporting that their expectations for the course were met. Compared with pre-course, participants reported improved self-efficacy and well-being post-course, which were maintained at follow-up. CONCLUSIONS: An interactive and applied virtual education course delivered to a large group of family caregivers of adults with IDD was both feasible and acceptable. It positively impacted participants' well-being by offering much needed mental health support and creating a peer-led community of practice.

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

BACKGROUND: Due 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. METHODS: This 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). RESULTS: Across 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. CONCLUSIONS: During 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.

Time to be counted: COVID-19 and intellectual and developmental disabilities-an RSC Policy Briefing

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.

Beliefs regarding COVID-19 vaccines among Canadian workers in the intellectual disability sector prior to vaccine implementation.

BACKGROUND: Workers supporting adults with intellectual disabilities (ID) experience significant stress in their essential role during COVID-19 due to the high risk of their clients contracting COVID-19 and having adverse outcomes. The purpose of the current study was to describe the attitudes of workers towards COVID-19 vaccination prior to vaccination rollout, with a view to informing strategies to promote vaccine uptake within this high-risk sector. METHODS: An online survey was sent via email to workers supporting adults with ID in Ontario, Canada, between January 21 and February 3, 2021 by agency leadership and union representatives. RESULTS: Three thousand and three hundred and seventy-one workers, representing approximately 11.2% of Ontario workers supporting adults with ID completed an online survey. Most reported that they were very likely (62%) or likely (20%) to get a COVID-19 vaccine (vaccination intent) although 18% reported they were less likely to do so (vaccination nonintent). Workers with vaccination nonintent were younger and were more likely to endorse the beliefs that (1) it will not benefit them or those around them, (2) it was not part of their job, (3) rapid development confers uncertainties and risks, and (4) they were scared of potential vaccine side effects. CONCLUSIONS: There is need to address common misconceptions among workers supporting adults with ID to help activate them as vaccine advocates in the communities they serve. Partnered efforts between workers, unions and agency leadership with public health experts to address concerns are required.

"The doctor will see you now": Direct support professionals' perspectives on supporting adults with intellectual and developmental disabilities accessing health care during COVID-19.

BACKGROUND: It is critical to consider how rapid changes in health care delivery and the rise in use of virtual modalities have impacted adults with intellectual and developmental disabilities and caregivers. OBJECTIVE: The purpose of this paper is to describe direct support professionals' experiences assisting adults with intellectual and developmental disabilities in accessing virtual and in-person health care during COVID-19. METHODS: A content analysis was conducted on responses obtained from an online questionnaire distributed to 942 direct support professionals in Canada. Descriptive statistics were used to report the type of visits that occurred and open text responses describing these visits were coded. RESULTS: Twenty four percent of direct support professionals reported supporting someone at an in-person medical appointment, 22% reported attending at least one video-based virtual appointment and 58% reported supporting at least one phone based virtual appointment in the first 5 months of the pandemic. They identified several barriers and facilitators with each type of visit which suggests there is no "single way" to provide health care to this group, but that optimal care depends on maximizing the fit between the person's abilities, the skill set of direct support professionals and health care providers, and the presenting health care issue. CONCLUSIONS: Study findings provide insight into the experience of health care for this population during COVID-19 and can be used to support direct support professionals and adults with intellectual and developmental disabilities to adapt to safe, supportive and comprehensive virtual and in-person health care during the pandemic and beyond.

Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. METHODS: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. RESULTS: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. CONCLUSIONS: Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.