In partnership with McGill University, we are initiating a project which aims to identify barriers to accessing and using healthcare services for children who are M-LS (Minority Language Speakers) on the spectrum and their families, across Canada, and to identify solutions to mitigate these barriers. Minority language speakers, i.e. persons that speak a language other than the primary language of their region.
We are inviting members from across the country to join a steering committee, such as support persons, service providers, program administrators, etc. Non-academic committee members will be compensated for their time.
PROJECT OBJECTIVE:
The project aims to identify barriers to accessing and using healthcare services for children who are M-LS (Minority Language Speakers) on the spectrum and their families, across Canada, and to identify solutions to mitigate these barriers. We aim to support healthcare providers in eliminating these barriers to ensure equitable services for people on the spectrum, regardless of their language background.
Findings will inform decision-makers regarding the barriers to healthcare access faced by M-LS (Minority Language Speakers) on the spectrum, with the aim of increasing equity in healthcare access between majority and minority-language speakers across Canada.
ROLE OF THE STEERING COMMITTEE
The project will be guided by a Steering Committee of 8-10 stakeholders representing six regions (Maritimes, Québec, Ontario, Prairies, British Columbia, Northern Canada). Stakeholders will include Autism Alliance Canada, researchers (n=3) from McGill and Dalhousie University, caregivers, adults on the spectrum, healthcare administrators, community groups and clinicians, all of whom are M-LS or work with people on the spectrum who are M-LS. Together, the Steering Committee will meet biweekly in Fall 2022 to:
- Finalize the research protocol
- Recruit participants for the Focus Groups.
- Develop an interview plan and complete Focus Group interviews in each region (optional).
- Guide national and regional policy reports based on the Focus Group interviews.
BACKGROUND CONTEXT:
Children with neurodevelopmental disorders who are M-LS face several barriers to accessing and using healthcare services, and that these barriers have life-long consequences. Barriers such as professionals’ erroneous beliefs regarding bilingualism in these children lead to recommendations against bilingualism and delays in accessing diagnostic and intervention services. Also, the lack of understanding regarding how to assess these children adequately leads to misdiagnosis9. And sadly, the scarcity of support by professionals and by “the system” for the acquisition of the minority-language causes parents to stop speaking their minority-language with their child. Thus, at a critical point in their development M-LS face important disparities which can have life-long consequences for children’s development and on families’ well-being. For more information, we invite you to read the project objectives and background here.
WHAT WE WILL DO:
Five Focus Groups facilitated by the Autism Alliance of Canada will be convened at six targeted regions of Canada: Maritimes, Québec, Ontario, Prairies, British-Columbia, and the North.
Focus Groups will be composed of:
- Support persons of young children on the spectrum who are M-LS,
- Clinicians,
- Administrators
- Community groups who serve people on the spectrum who are M-LS.
- Adults on the spectrum who are from minority-language families, but who may or may not speak the minority language today are also welcome to join the steering committee, to capture the long-term impacts of the identified barriers
To promote comfort and limit self-censorship, participants from each specific stakeholder group will complete their Focus Group interview together.
DELIVERABLES:
This project will produce a comprehensive report including pan-Canadian recommendations to support the development of the upcoming National Autism Strategy (NAS) with specific considerations for each region.
JOIN THE STEERING COMMITTEE
If you are interested in joining the steering committee for this initiative, please contact us at info@autismalliance.ca. We will connect you with the team leading this initiative.
