Over the last few months, CASDA has launched five working groups, collecting the voice of stakeholders from across the country on key areas from the Blueprint following our Webinar Informing Canada’s Autism Strategy: Lessons From Across the Globe. These Policy Working Groups are lead by CASDA Board Members who co-chair this work with graduate student trainees.

Furthermore, the Policy Working Groups were formed by an open call to CASDA members with lived experience along with key experts and CASDA members from the sector. Additionally, a series of policy briefs, informed in the community, are being developed – from issues ranging from equitable approaches, Indigenous affairs, Disability Tax Credit, and employment and job coaching.

Affordability & Access

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The KBHN-CASDA Affordability & Access WG is co-chaired by Brittany Finlay, a KBHN-CASDA policy practicum fellow and Research Association at the School of Public Policy at University of Calgary, and Brooke Pinsky, CASDA board member and Programs and Services Coordinator at Autism Edmonton.

There are 11 individuals from Alberta, Ontario, and British Columbia, in various positions from a variety of different organizations, and with varying life experience. Group members include autistic individuals, parents/caregivers of children on the autism spectrum, PhD candidates, and individuals working at non-profit organizations and organizations responsible for providing services. Over the next several months, this WG will use these ideas as the foundation for the creation of tangible options for policy change at the Federal level to help to begin to address the barriers that preclude access to services. By including a variety of voices and perspectives in these discussions, the group will establish policy options that are impactful, and that have the potential to make changes that will have a sustained, positive impact on the autism community.

Employment

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The KBHN-CASDA Employment Policy WG is co-chaired by Vanessa Tomas, a KBHN-CASDA policy practicum fellow and first year PhD student at the University of Toronto, and Debbie Irish, the Chair of CASDA and the Chief Operating Officer of the Canadian Council on Rehabilitation and Work.

There are nine members from Ontario, Nova Scotia, Alberta, British Columbia, and Saskatchewan, who work in a variety of roles across a multitude of organizations, such as Sinneave Family Foundation, Specialisterne Canada Inc, Peel Board of Education, and many more. The first meeting was introductory with a focus on highlighting important employment policy areas and understanding the scope of the WG members’ roles and organizational practices and strategies. Some potential policy areas that were highlighted included transition programs (including mentorship and coaching), reallocation of funding from wage subsidies, changes to the hiring process (competency-focused recruitment model), and improving and increasing employer training and enhancing organizational climate. Policy areas will be aligned with those suggested in CASDA’s Blueprint/Roadmap and the Pan-Canadian Strategy on Disability and Work.

Housing

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The KBHN-CASDA Housing Policy WG is co-chaired by Carolyn Abel, a KBHN-CASDA policy practicum fellow and Master of Public Health student at New York University, and Jill Farber, the Vice-Chair of CASDA and Executive Director of Autism Speaks Canada.

The WG has seven members, from Alberta, Manitoba, and Ontario, who hold various positions at a variety of organizations including Sinneave Family Foundation, Community Living Ontario, and Kerry’s Place. The group is made up of individuals with knowledge and experience of the current housing landscape for autistic Canadians, including those working at organizations responsible for providing services, or parents/caregivers of children on the autism spectrum. The first meeting focused on understanding the members’ roles and experience, and allowed members to highlight what they see as the most important issues and potential policy areas to improve the current housing landscape for autistic individuals. Next steps for this group will be to distinguish areas that are within the federal jurisdiction, from provincial and municipal jurisdictions, and identify specific policy options that the federal government can take that will have a sustained, positive impact on the autism community.

Information

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The KBHN-CASDA Information Policy Committee is co-chaired by Stephen Gentles, a KBHN-CASDA policy practicum fellow and postdoctoral CIHR Health System Impact Fellow at Autism Ontario and McMaster University, and Leslie Peters, Executive Director of Autism Yukon and former CASDA Board member.

In addition to co-chairs, the committee includes 11 regular members and several one-time contributors, representing provinces across Canada. The types of stakeholders serving on the committee include clinicians, researchers, parent-caregivers, community organization representatives, and, the largest group represented, autistic adults. Affiliated organizations included Western University, CHILD-BRIGHT, CIHR, and University of Alberta. The first meeting concentrated primarily on establishing a common understanding of the broad scope of information (with reference to the scan of international autism strategies conducted by the policy practicum fellows), with some initial discussion of principles that should guide information policy and be featured in any recommendations the group develops. In future meetings the committee will develop and consider a list of possible federal policy alternatives related to information, and develop an argument around the most promising option.

Research & Governance

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The KBHN-CASDA Research and Governance WG is co-chaired by Daljit Gill-Badesha, a KBHN-CASDA policy practicum fellow and EdD student at the University of British Columbia and Nathalie Garcin, CASDA Board Member and the Founder of Clinique Spectrum in Quebec.

There are six additional WG members from Ontario, Alberta, and a post-doc student currently in the United Kingdom. These members provide expertise from their roles in research, clinical practice in neurodevelopmental disorders with children/youth and adults, executive leadership and decades of advocacy for policy action in this area. Some examples of organizations reflected include Enterprise4Good, New Haven Learning Centre, Clinique Spectrum, and educational institutes such as the Universities of Ottawa, Cambridge, and Carleton. This first meeting was a brief introduction of the members and then a high-level overview of elements of research and governance that could be further researched to provide the government with an effective pitch to act on a National Autism Strategy. The committee members discussed the role and potential of the National Autism Surveillance System (NASS), role of big data and modelling (beyond basic headcounts) that can support federal leadership and decision-making, and how to ensure voice and inclusion of those with lived experience is brought into our discussions and recommendations. The next steps include a review of Austica and Interagency Autism Committee in the USA for potential components to consider for Canada. Policy recommendations will be aligned with CASDA’s Blueprint/Roadmap for the NAS.