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Policy Compendium Tool
Recommendations for a National Autism Strategy from Community and Stakeholder Engagement
On April 1, 2019, Autism Alliance of Canada unveiled the Blueprint for a National Autism Strategy (NAS), as a framework outlining 5 key areas of focus:
In 2020, the Public Health Agency of Canada (PHAC) requested the Canadian Academy of Health Sciences (CAHS) to conduct research and develop its now-published assessment report on autism. Their work and report was aimed at summarizing the evidence on wide-ranging issues and topics relevant for developing a comprehensive National Autism Strategy (NAS), and was organized under three themes:
With funding from Kids Brain Health Network (KBHN), Autism Alliance of Canada convened Policy Development Working Groups to foster dialogue and synthesize actionable policy recommendations to address issues in the outlined areas of focus and themes. The multi-disciplinary working groups were comprised of researchers, professionals, caregivers, Autistic advocates and other stakeholders from across Canada, led by Autism Alliance of Canada-KBHN policy fellows. Working groups participated in a structured timetable of facilitated discussions, with the goal of developing sets of focussed policy briefs.
In 2020, policy briefs targeted the 5 key areas of focus (Research and Governance, Affordability and Access, Employment, Housing, and Information) outlined by Blueprint for a NAS. In 2021, policy briefs targeted the three themes proposed by CAHS (social inclusion; diagnosis, supports, and services; and economic inclusion). The aim of these briefs is to aid and support the federal government in taking actionable and effective steps in its early work to implement Canada’s NAS. The 2020 Policy Compendium was published last year and the 2021 Policy Compendium is now available for access. Please click on the links below to view the official published documents for both policy compendia.
Purpose of the policy compendium tool
Autism Alliance of Canada’s Policy Compendium Tool is a collection of recommendations on key themes derived from the Autism Alliance of Canada-KBHN policy briefs. This online tool makes Autism Alliance of Canada’s policy work accessible and user-friendly. These recommendations can serve as a resource for stakeholders to engage in conversation about a National Autism Strategy and support efforts to improve the quality of life of Autistic people in Canada. The tool offers easy navigation of information organized into key themes. Please click on the links to learn more about each theme.
HOW YOU CAN USE THIS
The Policy Compendia can be helpful in your policy work and advocacy. Conversations around policy can often be difficult to access. Whether you wish to deepen your knowledge of current issues faced by Autistic people in Canada or want to compare recommendations by theme – these compendiums offer lots of information to help you along the way. We provide community recommendations on Research and Governance, Affordability and Access, Employment, Housing, Information, Social inclusion; diagnosis, supports, and services; and Economic inclusion. This information can serve as a starting point for further engagement with community and government partners. Click on each theme below to learn more!
Explore Compendium Themes
Many programs that support Autistic people in Canada are funded and delivered at the provincial and territorial levels. Because of this, there is a lack of information sharing between the Federal government and its partners. This leads to an inconsistent application of research and a variety of service types available within those regions and, ultimately, fragmented knowledge sharing across the country. As it currently stands, there is no set of national standards on research programs and evaluation to provide consistent support for Autistic people in Canada and their families across a lifespan. Recommendations in this area include the following:
- A Leadership Framework: create a cross-government leadership coordinating commission and establish an FPT implementation framework.
- Federal Leadership and Provincial/Territorial Engagement: establish a federal-provincial-territorial First Ministers’ Meeting and the brief includes 10 specific actions for a First Ministers’ Meeting.
- Recommendations on Advisory for a NAS: create an advisory group for a NAS that models the structure of Accessibility Standards Canada; ensure that standards development review processes are both open and inclusive; and, finally, ensure a equity, diversity, inclusion lens to include Autistic people and service providers who are women, Indigenous, from rural and remote communities, racialized immigrants and newcomers, and from the LGBTQ+ community as members of the board of the proposed advisory panel or organization.
In Canada, challenges with affordability and access experienced by autistic individuals and their families can create a barrier to the services and support they need to reach their full potential and live a fulfilling life. The following briefs focus on three specific challenges associated with affordability and access in Canada:
- Federal Disability Tax Measures: continue progress towards implementing the recommendations outlined in the 2019 First Annual Report from the Disability Advisory Committee; reform and modify disability tax measures; and raise awareness for tax measures among Autistic Canadians.
- Early Win Opportunity – Reforming the Disability Tax Credit: replace Form T2201 with new application form(s) that better reflect the challenges faced by children and adults with neurodevelopmental conditions; expand the number of practitioners eligible to fill out the renewed DTC application form; recognize autism as a lifelong neurodevelopmental condition; and make DTC refundable to ensure it meets the needs of low-income Autistic Canadians.
- Improving Access in Society: champion a comprehensive training program for professionals to expand capacity; prioritize mental health initiatives within existing federal funding initiatives; and introduce a national autism waitlist reduction initiative.
- Federal Leadership: Recommendations in this brief consist of actions for the First Ministers’ Meeting recommended in the Research and Governance area, and include: enhance autism diagnosis portability across Canada; implement early developmental interventions services; examine service delivery models; access P/T disability income assistance programs and implement reforms as needed; expand the capacity of P/T education systems to adequately educate and provide support to Autistic children; and improve P/T waitlist data collection and reporting.
- Early Developmental Intervention Services for Children on the Autism Spectrum: adopt the Enhanced 18-Month Well-Baby Visit to grant children access to early developmental intervention services; invest in sustainable linkages of population-level databases to determine the trends in prevalence and developmental health of Autistic children over time; and coordinate a taskforce to develop a standard set of universal early developmental intervention and ensure delivery across the country.
Only 3 in 10 Autistic Canadians report being employed. Additionally, those who are employed are often what we call ‘underemployed’, meaning that they are unwillingly working shorter hours for less pay and often at jobs that are below their intellectual potential. The following briefs address pre-employment programs and inclusive workplaces in Canada:
- Pre-Employment Programs: expand and enhance current pre-employment programs; encourage provinces/territories to implement programs within high-schools and post-secondary institutions to improve opportunities of finding employment and preparing individuals for employment; establish sustainable autism-specific funding platforms, ensure continuous evaluation of these funded programs to ensure effectiveness and merit for sustainability efforts.
- Inclusive Workplaces: increase and develop employer training initiatives and opportunities for hiring and supporting Autistic employees; commit to a workplace adjustment/accommodation fund to support employers who hire Autistic individuals; select, disseminate, and help implement best practices from federally funded programs that demonstrate effective recruiting, selecting, hiring, onboarding, and retention models used by Canadian employers; shifting from ‘one-size-fits-all’ model to competency-based hiring; increase access to and implementation of on-the-job supports for Autistic employees; allow for and provide alternative methods of funding to support individuals on the autism spectrum in the workplace.
Limited housing options exist for people with developmental disabilities generally and is compounded by a lack of autism-specific support. In addition, many Autistic adults do not have sufficient income through employment or social assistance to live independently. Recommendations in this area include the following:
- Income Support Needs Related to Housing: convene Federal/Provincial/Territorial working group to design a disability supplement to the Canada Housing Benefit; work with provinces and municipalities on affordable, stable rent control; and implement the recommendations from the Solutions Lab “Designing a Registered Disability Savings Plan Homeownership Plan”, allowing RDSP beneficiaries to withdraw funds to be used towards a downpayment for a home.
- Addressing Housing Supply Challenges: direct Canada Mortgage and Housing Corporation to expand the current indicators used for inclusive housing to include persons with developmental disabilities allowing for full inclusion; build connections between affordable housing developers and service agencies, to integrate principles of inclusive design into new developments; appoint Autistic representation to the National Housing Council.
- Early Win Opportunity for the NAS: leverage existing NHS innovation and research investments and include specific opportunities to better target existing initiatives to respond to the needs of Autistic Canadians.
Information includes evidence-based information products, such as clinical or professional practice, guidelines, professional training, programs, education for families, or public media campaigns, as well as data systems used in service navigation by caregivers and policymakers, and can be found in government administratives databases, clinical community organization, and large research cohort databases. The following briefs aim to improve information for each of the above areas:
- Integrating Data Systems: incentivize the study of administrative databases for each service system (Education, Social, Health) across PTs to identify strong models for PTs to follow in terms of minimal data elements, cross-linking to other databases, and other standards required for a Learning Health System; and set PHAC-recommended minimum data elements (data standards) for PT service systems, to support the needs of ongoing or projected federal data collection initiatives such as the PHAC National Autism Spectrum Disorder Surveillance System.
- Coordinated Provincial Autism Program Information Sharing: fund a gap analysis to determine information needs of PT policymakers to make decisions relevant to autism policy and program design
- Communication Standards and Media Campaign to Improve Public Attitudes Towards Autism, Promoting Equity and Inclusion: develop a public-facing media campaign to i) promote a balanced understanding of autism as a neurodevelopmental condition that comes with strengths as well as challenges that can be disabling, and ii) introduce and model acceptable language for referring to and describing Autistic Canadians; for Accessibility Standards Canada (ASC) i) to broaden the understanding of accessibility to include language and attitudes about disability, ii) prioritize the development and implementation of standards for incorporating respectful strengths-based language related to autism into communications for adoption and iii) employ one or more Autistic experts to compile existing resources for developing such language standards.
Three briefs were developed within the theme of Social Inclusion. The first was aimed at addressing the inconsistencies in the application of accessibility standards across federal and provincial-territorial levels of government and organizations. It includes three recommendations: to extend federal accessibility legislation to private-sector organizations across Canada; to build federal-provincial-territorial partnerships to streamline accessibility standards; and to identify shared social inclusion indicators and promptly report on the findings to monitor progress of social inclusion.
The second brief was aimed at breaking down physical and communication barriers for a more socially inclusive Canada. It includes two recommendations to improve accessibility of the physical environment, support communication in public spaces (physical and online).
The third brief, on the topic of postsecondary education, contains recommendations to expand inclusion and access, and to improve data collection regarding Autistic-specific registration and graduation rates.
The first of three briefs in this theme was on the topic of mental health. It contains recommendations to work with the provinces-territories to eliminate barriers for qualified professionals to provide care across jurisdictions; provide opportunities for health professionals to better support Autistic people’s experiences of mental health; ensure professionals have access to current research to optimize quality of care; and harness existing infrastructure to provide mental health information and resources to Autistic Canadians.
The second brief was aimed at addressing disparities in resources and services across the lifespan and geographically. It contains recommendations to develop nationally-recognized standards of care; develop a federally-maintained database to assess metrics related to established standards of care; and promote equity in autism services funding and resource availability across the lifespan and across Canada geographically.
The third brief was aimed at addressing disparities experienced by underserved sub-populations within the autism community, such as rural-and-remote, and BIPOC groups. It includes recommendations to establish policy initiatives to attract health care and paraprofessional providers to remote and rural areas; and to expand federal grant and partnership opportunities for autism-focused community organizations serving immigrant, racialized, and ethnocultural individuals and their families.
The first of three briefs in the Economic Inclusion theme was on the topic of employment. It contains recommendations to prioritize federal funding for person-directed case-management programs to support transition planning in high school; expand the accessibility and sustainable funding of successful federally-funded employer-demand-focussed initiatives such as Ready, Willing, and Able (RWA); and introduce transition-planning and career development in middle school.
The second brief, on the topic of housing, contains recommendations to prioritize funding to increase awareness and support for providing autism-friendly housing; provide funding to establish a national autism housing platform; increase access to affordable housing by increasing supply; and promote accountability within the housing sector.
The final brief, which was focused on transportation and mobility, includes recommendations that disability-focussed upgrades to transit address the needs of neurodevelopmental disability; to ensure adequate funding for training and educational programs to enhance independence in transportation for Autistic adults; to Develop nationally recognized accessibility transport standards and regulations that consider the needs for Autistic individuals, and to establish a Transportation Autism and Developmental Disabilities Research Center.