Question Period Note: Autism
About
- Reference number:
- MH-2022-QP-0076
- Date received:
- Dec 14, 2022
- Organization:
- Health Canada
- Name of Minister:
- Duclos, Jean-Yves (Hon.)
- Title of Minister:
- Minister of Health
Issue/Question:
N/A
Suggested Response:
• The Government of Canada is committed to improving the health and well-being of Autistic Canadians and to supporting families, supporters, and caregivers. The Government is also committed to working collaboratively with provinces, territories, families, Autistic Canadians, Indigenous Peoples, and stakeholders toward the creation of a national autism strategy.
• The Government of Canada is committed to helping and supporting the needs of all Canadians with disabilities, including neurodevelopmental conditions like autism, as well as those who care for them and provide much-needed support.
• Budget 2021 provided $15.4 million over two years, starting in 2021-22, to work collaboratively with provinces, territories, families and stakeholders toward the creation of a national autism strategy.
• The Public Health Agency of Canada is leading development of the strategy, which will focus on improving the health and well-being of Autistic individuals, their families, supporters and caregivers.
• Extensive engagement, through a variety of mechanisms, is taking place to inform the development of the strategy to ensure it meets the needs of partners. The Public Health Agency of Canada hosted the National Autism Conference on November 15-16, 2022. The virtual event brought together the views of Autistic Canadians, their families and caregivers, advocates, PTs, Indigenous Peoples and various stakeholders to prioritize areas for action and identify possible short, medium and long-term objectives.
Background:
In the Minister of Health’s 2021 Mandate Letter, the Prime Minister asks the Minister to work in collaboration with provinces, territories, families and stakeholders to accelerate the development of the national autism strategy. This reiterates the 2019 Mandate Letter commitment to work towards the creation of a national autism strategy.
Government of Canada Initiatives: the Public Health Agency of Canada (PHAC) is leading the development of a national autism strategy. A strategic decision was taken to provide $1.67 million to the Canadian Academy of Health Sciences (CAHS) to undertake a neutral, arms-length assessment on autism.
The CAHS’ consultation process, launched in February 2021, was broad, inclusive, evidence-based and provided all Canadians the opportunity to inform the development of the strategy. In recognition of the breadth of issues to be considered in developing a strategy that reflects diverse needs, the CAHS applied a social determinants of health lens to gather evidence and structure the dialogue.
A thorough evidence and scientific review was conducted by the CAHS that included: published research, reports from government and organizations, best practices, and Canadian and International policies.
The CAHS Autism Assessment Report was published on May 10, 2022 and can be found on the CAHS website. Findings are divided into 3 key themes: 1) social inclusion, 2) economic inclusion and 3) evidence-based supports and services that cut across multiple levels of government responsible for providing support for Autistic Canadians. Overarching and cross-cutting themes including intersectionality and diversity, data collection and sharing, research and ongoing evaluation were also identified.
PHAC continues to engage with federal partners, provinces, territories, Autistic Canadians, national and regional stakeholders and Indigenous Peoples through a variety of mechanisms on the national autism strategy. PHAC hosted the National Autism Conference on November 15-16, 2022, which brought together the views of Autistic Canadians, their families and caregivers, advocates, provinces, territories, Indigenous Peoples and other stakeholders to solidify priorities for action toward a national autism strategy and identify possible short, medium and long-term objectives.
Discussions, collaboration and knowledge-sharing at the conference, along with the findings of the Canadian Academy of Health Sciences’ engagement activities and scientific review, and PHAC’s engagement with federal partners, provinces, territories, Indigenous Peoples, families and other stakeholders will be used to inform the creation of a national autism strategy.
Budget 2021: Announced $15.4 million for PHAC (comprised of $8.4 million in existing and $7 million in new funding) to support strategy development ($4.1 million), address gaps in autism surveillance ($2.2 million), and assist with the development of IT infrastructure to support data collection ($0.7 million).
PHAC Investments: Budget 2018 provided $20 million over five years to support two new initiatives:
1) The Autism and Intellectual Disabilities Knowledge Exchange Network (AIDE Canada) ($10.9 million/5 years) provides access to online resources, including an inventory of services, supports, employment opportunities and local programming for families across the country. Six AIDE Canada locations provide a point of access for Canadians to obtain resources and supports on autism. AIDE Canada also released a COVID-19 Resource Hub to share up-to-date, trusted information related to COVID-19 specifically tailored to, or relevant for, Canadians on the autism spectrum, their families and caregivers; and
2) The Autism Spectrum Disorder Strategic Fund is providing $9.1 million over 5 years for community-based projects that pursue innovative program models, help reduce stigma, and integrate health, social and educational components to better serve the complex needs of Autistic Canadians and their families.
PHAC also provided over $100K to the Canadian Paediatric Society to develop autism guidelines for early detection and screening, diagnosis, and post-diagnosis follow-up (released in October 2019).
PHAC Surveillance Activities: In support of the development of a national autism strategy, PHAC continues to enhance surveillance of autism spectrum disorder to provide evidence that will inform future investments and activities. PHAC is working with federal, provincial, territorial and Indigenous partners, researchers and autism stakeholders to enhance its autism surveillance activities through the development of new data and reporting on prevalence, including all jurisdictions, age ranges (children, youth and adults), co-occurring conditions, as well as other demographic and equity indicators. In February 2022, PHAC released a report titled “Autism Spectrum Disorder – Highlights from the 2019 Canadian Health Survey on Children and Youth.” This report is one of the key commitments made in Budget 2021 to support the development of a national autism strategy. It provides new evidence on prevalence, health status and the life experiences of Canadian children and youth with diagnosed ASD, prior to the COVID-19 pandemic.
Budget 2022: PHAC is investing over $3.9 million over three years to support the collection of a second cycle of the Canadian Health Survey on Children and Youth (CHSCY). Similar to the 2019 CHSCY, this second cycle will allow for further reporting on the prevalence and characteristics of Autistic Canadian children and youth, as well as the wider impacts of the COVID-19 pandemic and information regarding pathway to diagnosis.
CIHR Investments: Over the last five years, CIHR has invested approximately $68 million in research to increase understanding of autism and provide better services and supports to Autistic Canadians and their caregivers.
This includes research on the development of innovative technologies for Autistic children and their families. For instance, an interdisciplinary team led by Dr. Francois Bolduc from the University of Alberta is creating an artificial intelligence-based interactive ‘chatbot’ that will allow Autistic persons (and persons with other neurodevelopmental disorders), their families, health professionals and teachers to better navigate the healthcare system by identifying personalized interventions and resources through machine learning.
Dr. Lai at McGill University is exploring the relationship between research and policy, with the goal of improving how children (and their families) with ASD and other developmental brain-based conditions access much-needed services and supports throughout their lifespan.
Through Canada’s Strategy for Patient-Oriented Research, CIHR and its partners are investing in CHILD-BRIGHT, an innovative pan-Canadian network that aims to improve life outcomes for children with brain-based developmental disabilities and their families. The network’s many projects include:
• “Ready 2 Work”, an online vocational/employment readiness platform developed alongside self-advocates who operate vocational programs for young people with autism; and
• “MEGA TEAM”, which is evaluating whether a take-home video game can improve executive functioning in children with autism.
Employment and Social Development Canada (ESDC): In April 2020, Minister Qualtrough established the COVID-19 Disability Advisory Group to provide real-time expert advice on the lived experiences of persons with disabilities, and to ensure a disability-inclusive approach to the Government of Canada’s response to the pandemic. The Advisory Group published a report in December 2020 outlining its recommendations and the Government’s actions to support persons with disabilities during the pandemic. With a renewed mandate, the Advisory Group is building on previous work and will continue to provide expert advice on disability inclusion within Government priorities and on implementation of Government programs and policies.
The December 2021 Government mandate letters reaffirmed the September 2020 Speech from the Throne commitment to bring forward Canada’s Disability Inclusion Action Plan (DIAP) to improve the economic inclusion and quality of life of Canadians with disabilities. As part of this action plan, the government is developing a robust Employment Strategy for persons with disabilities. This Strategy will take a holistic and intersectional view of the experiences of persons with disabilities in the workforce. It will include measures to expand access to skills training and opportunities for workers and entrepreneurs, while also supporting employers to create inclusive workplaces. The Canada Disability Benefit (Bill C-22), which was introduced in the House of Commons on June 2, 2022, is a cornerstone of the Plan. The Plan will also include measures that support accessible and inclusive communities, and that advance the adoption of a modern approach to disability across the Government of Canada, including a better process to determine eligibility for Government disability programs and benefit.
Budget 2022 provided $20 million to ESDC’s Ready, Willing and Able project to help Autistic persons or individuals with intellectual disabilities find employment. This is part of a larger commitment to invest an additional $272.6 million over five years, starting in 2022-2023, for the implementation of the Employment Strategy through the Opportunities Fund for Persons with Disabilities. This investment will help to address labour market shortages through increased participation by persons with disabilities, including autism, and make workplaces more accessible and inclusive.
The DIAP will be updated over time. In consultation with the disability community, it will be built upon and refreshed, and grounded in the principle of “Nothing without Us”. It is a whole-of-government plan that crosses over departmental responsibilities.
Employment Support (through the Opportunities Fund for Persons with Disabilities Program): To improve employment outcomes for persons with intellectual disabilities and autism, the Government of Canada’s Opportunities Fund for Persons with Disabilities has invested over $40 million since 2014-2015 in the Ready, Willing and Able (RWA) project. RWA is a national employment program for Autistic persons and individuals with intellectual disabilities that is delivered through a partnership between Inclusion Canada (formerly the Canadian Association for Community Living) and the Autism Alliance of Canada (formerly the Canadian Autism Spectrum Disorders Alliance). Over the same period, the program has invested over $13.3 million in skills training and employment projects targeting Autistic persons delivered by the Sinneave Family Foundation. Moreover, Budget 2022 provided an additional $272.6 million over five years, starting in 2022-2023, to implement the Employment Strategy under the Opportunities Fund. This investment will help address labour market shortages through increased participation by persons with disabilities, including ASD, and make workplaces more accessible and inclusive. Of these funds, $20 million is allocated to the RWA project to help Autistic individuals and persons with intellectual disabilities find employment
Senate Bill S-203 – An Act Respecting a Federal Framework for Autism Spectrum Disorder: On November 24, 2021, the Honourable Leo Housakos introduced Senate Bill S-203, An Act Respecting a Federal Framework on Autism Spectrum Disorder. The purpose of the Bill is to bring forth the development of a federal framework to support Autistic Canadians, their families and their caregivers. The Bill outlines requirements for the development of a federal framework, including measures to be provided, such as financial support for Autistic persons, support for caregivers, online resources and best practices, a national research network and a national awareness campaign. The Bill also sets out requirements for consultation, a national conference, and regular reporting to Parliament on implementation of the federal framework.
Bill Status: Bill S-203 was referred to Committee on December 8, 2021. On April 27, 2022, the Standing Committee on Social Affairs, Science and Technology (SOCI) passed the Bill (as amended during clause by clause consideration on April 6, 2022). On May 12, 2022, the Bill, as amended, was passed in the Senate and then referred to the House of Commons. On October 17, 2022, first reading of Bill S-203 was completed in the House of Commons.
Provincial/Territorial Support: All provinces provide autism-specific funding for a range of investments focused on supports, services (including education-based supports for pre-school and school-aged children). While the three territories do not have autism-specific funding, they do have supports for broader disability services, including autism.
Language Note: A “person-first” approach, which acknowledges the person before the disability, is seen in wording such as “individuals with autism”. In “identity-first” language, the condition or identity is listed first, as seen in the phrase “Autistic Canadian”. In the context of autism, identity-first language acknowledges that being autistic is an inherent part of a person’s identity, not an addition to it. Within the autism community, preferences around language use (i.e. person-first vs. identity-first) differ. The Government of Canada acknowledges the diverse views of Autistic Canadians, their caregivers and the community as whole. It is encouraged to use an individual’s expressed preferred language whenever possible.
Additional Information:
• Autism (also known as autism spectrum disorder or ASD) is a lifelong neurodevelopmental condition. Every Autistic person has a unique combination of symptoms, symptom intensity and co-occurring conditions. Since everyone experiences the condition differently, supports should match individual needs.• Autism (also known as autism spectrum disorder or ASD) is a lifelong neurodevelopmental condition. Every Autistic person has a unique combination of symptoms, symptom intensity and co-occurring conditions. Since everyone experiences the condition differently, supports should match individual needs.