Time to be counted: COVID-19 and intellectual and developmental disabilities—an RSC Policy Briefing
Abstract
Mandate and scope
Policy recommendations
Summary list of recommendations
Introduction
Role of policy, supports and services
Recommendations for a disability inclusive policy response
What is a “disability-inclusive” pandemic response?
1. Mainstreaming inclusion of persons with disability in all aspects of pandemic response and recovery efforts
“Whenever there’s policies being made or whenever we are trying to, as a society, learn how to be more inclusive, it’s really just…a pointless exercise if you have a certain group of experts making recommendations and policies without actually including…the people who have that lived experience…right now it is probably more important to make sure that decisions and policies…are made with our okay and with our input.”—Jake Anthony, self-advocate
2. Developing policies and programs to address disability-specific considerations, with input from the IDD community and caregivers
Health risks associated with COVID-19 for individuals with IDD
Evidence on COVID-19 health risks for individuals with IDD
Comorbidities and its relation to complications and death
Evidence for children with IDD
Conclusion
“How do we know what’s right and what’s wrong? We see so much on TV—this doctor says something, and this doctor says something.”—Self-advocate, on the need for clear information about COVID-19 and vaccination
Access to non-COVID-19 related health care services
Access to health and social care services for persons with IDD before the pandemic
Disruption of services during the COVID-19 pandemic
“I find it very important to have a family member or someone very close to you, or a worker, to be able to come into the doctor’s office, or to the hospital with you. It is very important.”—Self-advocate
Benefits and limitations of telehealth as a tool for accessing services
Increased risk of mental health issues due to COVID-19 pandemic for persons with IDD
“This pandemic has put an emotional strain on mental health when people live alone. They feel scared, they can’t hug anyone. I want to feel someone hug me.”—Self-advocate
Conclusion
Leisure participation and community inclusion
Participation and community inclusion prior to the pandemic
Impact of COVID-19 on participation and community inclusion
“I rarely go out because I am more at risk. Isolation has definitely had an impact on my mental health.”—Youth with developmental disability
Evidence of the impact of COVID-19 on participation for children with IDD
Evidence of the impact of COVID-19 on participation for adults with IDD
Need for improved strategies to accommodate leisure participation
Conclusion
Inclusive education
Impact of the pandemic on school access and learning
“[It’s] harder for students with disabilities, [when] you don’t have that person interaction. It would be harder online.”—Self-advocate
Summary of consequences of the pandemic on education
Conclusion
Income and employment
Developmental disability | Any disability | No disability | |
---|---|---|---|
Average before tax income (age 15–64) (Including earned income and government transfers) | $16 283 | $40 106 | $49 235 |
% Low income using Market Basket Measure | 28% | 17% | 10% |
% Not in labour force | 63% | 38% | 34% |
% Not completing high school | 40% | 18% | 9% |
Source: Data from Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability (Berrigan et al. 2020).
Impact of the COVID-19 pandemic on income and employment
“Even before COVID-19 some people had a hard enough time to find a job, but now it’s going to be double hard to find a job—not just because of a disability but for other people too because so many people got laid off—it’s not just going to be hard for us but for everybody.”—Joanne Gauthier, self-advocate
COVID-19 specific income support for persons with disabilities
Jurisdiction | Program (maximum monthly benefit) | Classification and treatment of $2000 monthly CERB payment* | Max disability income assistance per month when receiving CERB |
---|---|---|---|
British Columbia† | Disability Assistance ($1183) | Exempt income (no clawback) | $1183 |
Alberta | Assured Income to the Severely Handicapped ($1685) | Passive business income ($300 exempt, remaining 25% exempt = 75% clawback rate) | $410 |
Saskatchewan | Assured Income for Disability ($1064) | Non-exempt other income (Deducted one for one from benefits) | $0 |
Manitoba | Employment and Income Assistance ($1039) | Earned income ($200 is exempt, remaining 30% is exempt = 70% clawback) | $0 |
Ontario | Ontario Disability Support Program ($1169) | Earned income (Amount less than earnings exemption is exempt; amounts above earnings exemption clawed back at 50%) | $0 |
Quebec | Sociale Solidaritie ($1088) | Earned income ($200 is exempt; remainder will be clawed back at 100%) | $269 |
Nova Scotia | Disability Support Program ($850) | Non-exempt other income (deducted one for one benefits) | $0 |
New Brunswick | Enhanced Assistance ($797) | Non-exempt other income (deducted one for one benefits) | $0 |
Newfoundland | Income support ($906) | Non-exempt other income (deducted one for one benefits) | $0 |
PEI | AccessAbility Supports ($1163) | Non-exempt other income (deducted one for one benefits) | $0 |
Yukon | Social Assistance ($1342 (November–March), $1285 (April–May, October), $1227 (June–September) | Exempt income (no clawback) | $1285 |
Northwest Territories | Income Assistance ($2383) | Exempt income (no clawback) | $2383 |
Source: Adapted from Petit and Tedds (2020).
Income support for students with disabilities
Income support for caregivers
Adults with IDD and considerations for a disability inclusive CERB response
Conclusion
Caregiver support
Caregiver challenges prior to COVID-19
Impact of COVID-19 on caregivers
“I am not OK if my son is not OK. And he is not OK during COVID-19. We lost the life we had before.”—Pamela L., mother of a son with IDD
Evidence on increased caregiver burden during COVID-19
Supports for caregivers
Conclusion
Housing and congregate care
COVID-19 risk factors in congregate care
“My concern [is] that staff go from one place to another place.”—Kevin Johnson, self-advocate, on the need for protection of staff and residents in congregate care
Evidence on the impact of COVID-19 in congregate care settings
COVID-19 risk factors in more individualized settings
Conclusion
Population-level approaches to health
Integrating IDD in population health
A disability-inclusive public health response to COVID-19
Population data on COVID-19 for individuals with IDD
COVID-19 testing, treatment, and vaccination considerations for people with IDD
“We have to be able to accommodate everybody and not have a ‘one size fits all’ approach.”—Jake Anthony, self-advocate
Conclusion
Note from the authors
Land acknowledgement
Acknowledgements
References
Appendix 1
Theme | Recommendation | Section of Report (Rec #) | Stakeholder |
---|---|---|---|
Essential services and prioritization | DIP: Prioritize persons with IDD of all ages in the distribution of COVID-19 vaccinations in Canada along with other high risk clinical groups, in recognition of their heightened susceptibility to severe complications and death from the virus as well as the disproportionate impact of COVID-related public health measures on their health and well-being | Health risks (Rec #1) | Federal and provincial/territorial government |
DIP: Designate services, supports, therapy, and support workers for persons with IDD as essential across health and social care sectors | Access (Rec #3) | Provincial and territorial health and social service ministries | |
DIP: Ensure that hospital triage protocols and guidelines are inclusive, equitable, transparent, and grounded in an ethical process that is based on human rights principles and informed by patients who would be affected by such protocols, including persons with IDD and their families. Health care providers involved in the critical care triage process must also receive training to reduce the risk of discriminatory bias. | Population Health (Rec #19) | Provincial, territorial and local health service providers | |
Accessibility of services | DSP: Provide health care accommodations for people with IDD both during the pandemic and post-pandemic recovery | Access (Rec #4) | Local health and social care services |
DIP: Use and adapt telehealth as needed in an accessible manner to ensure functioning and well-being of individuals with IDD | Access (Rec #5) | Provincial, territorial and local health and social service providers | |
DIP: Ensure appropriate modifications, accommodations, and supports are available to enhance the participation, development, and well-being of students with IDD both during and post-pandemic | Education (Rec #10) | Provincial and territorial education ministries and school boards | |
DIP: Invest in post-pandemic accessible employment support for people with IDD to support recovery from COVID-19 related job losses and reduced employment | Income (Rec #15) | Federal government | |
DSP: Ensure continued access to resources for support staff, and guarantee safe and affordable housing options for individuals with IDD through greater investment in community-based housing and supports to promote independent living | Housing (Rec #18) | Federal and provincial/territorial government | |
Data | DSP: Collect, analyze, and report surveillance data for people with IDD, including information on COVID-19 prevalence and outcomes for individuals with IDD in public settings, institutional and residential care settings | Housing; Population Health (Rec #17) | Public health units and related systems |
DSP: Develop a data collection strategy of existing adapted and inclusive community programs, to identify community-specific gaps and needs | Leisure (Rec #7) | Provincial/territorial and local government | |
DSP: Monitor the long-term impacts of the pandemic on learning for students with IDD through individualized assessments | Education (Rec #11) | Ministries of Education | |
Funding | DSP: Allocate mental health services to address the unique needs of people with IDD and their caregivers who have been disproportionately impacted by the pandemic and ensure support for staff—including appropriate training and access to specialized mental health supports and resources | Access; Caregivers; Housing (Rec #6); | Provincial and territorial governments |
DSP: Allocate additional funding for community-based participation initiatives for people with IDD to support innovative solutions that are sustainable post-pandemic | Leisure (Rec #9) | Provincial and territorial government | |
DSP: Develop a National Disability Income Benefit sufficient to ensure a reasonable minimum income for all Canadians with a disability. | Income (Rec #12) | Federal Government | |
DIP: Design disability inclusive pandemic income supports. In addition, recognize persons with IDD and their families experience additional costs such as PPE for support staff and technology needs | Income (Rec #13) | Federal and provincial/territorial governments | |
DIP: Enhance emergency caregiver benefits to family members or guardians of persons with IDD who are required to take leave from employment to provide care due to COVID-19 or similar pandemics | Income; Caregivers (Rec #14) | Federal government | |
Information and guideline availability and accessibility | DIP: Ensure public health information and communication that addresses the health risks for children and adults with IDD is widely available and adheres to national accessibility standards | Health risks (Rec #2) | Federal and provincial/territorial government and health organizations |
DIP: Synthesize and promote an accessible resource and support guide with information on tools, virtual programs, and approaches to promote health navigation, social support, and leisure participation and inclusion opportunities for individuals with IDD and their families in local communities, which would remain useful post-pandemic | Leisure; Caregivers (Rec #8) | Federal government | |
DIP: Ensure that guidelines and policies for residential care and congregate care settings are aligned with proposed long-term care standards and that unrestricted access of essential family caregivers to individuals with IDD be embedded in those standards and communicated transparently | Caregivers; Housing (Rec #16) | Federal government |
DIP, disability-inclusive policy; DSP, disability-specific policy.
Information & Authors
Information
Published In
History
Copyright
Data Availability Statement
Key Words
Sections
Subjects
Authors
Author Contributions
Competing Interests
Metrics & Citations
Metrics
Other Metrics
Citations
Cite As
Export Citations
If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download.