Equity in health implies that ideally, everyone should have a fair opportunity to attain their full health potential and that no one should be disadvantaged from achieving this potential (World Health Organization).

Ahead of his talk a the Canadian Autism Leadership Summit, Dr. Shivajan Sivapalan, sat down with SAAAC to speak on issues of equity and access in addressing needs of vulnerable and marginalized communities.

Dr. Sivapalan has spent much of his professional life looking to increase equity and access in the autism sector in Ontario. His most recent projects have worked to increase access to diagnosis and intervention support for newcomer communities and the creation of a mental health program for caregivers.

Below were some of his thoughts on the journey to achieve equity and access in Canada for individuals on the autism spectrum, and their families.

What are the main challenges you see to achieving equity in your communities?

Achieving equity in high needs communities faces several challenges, particularly regarding representation, research, and policy-making. There is a need for a more representative approach that includes the needs of immigrant and newcomer families. Despite the foundation provided by the National Autism Strategy, there is still a lack of representation among those advocating for supports for the autism community and researchers/policy-makers looking at current needs. Many of the recommendations for supports are based on the needs of mainstream communities.

In my professional experience, only recently have I seen there been acknowledgment of the challenges faced by the South Asian community, as well as newcomer and immigrant families, in achieving equity in the autism community in Ontario. The research has shown that these communities tend to receive a later diagnosis due to factors such as poverty and cultural perceptions of complex needs, which creates a barrier to accessing autism-related services. However, several initiatives are being designed to address these barriers, such as SAAAC’s own Mobile Developmental Outreach clinic.

On the community level, we need to have more diverse community leaders and agencies raising awareness of the specific needs of their communities and building channels from these communities to the larger conversations taking place about autism services and supports provinicially and nationally.

What are the main barriers to achieving equity for your communities?

One of the primary obstacles to achieving equity for high-needs communities is the insufficient availability of resources. The available resources are often not tailored to the specific needs of the end-users in these communities, which hinders the effective dissemination of critical information regarding autism and autism supports. Additionally, culturally responsive education and programming are often lacking, leading to feelings of isolation and a reluctance to seek assistance among many families.

This is a frequent grievance among our families at SAAAC, which prompted the creation of our SAAAC CARES program, a culturally responsive caregiver support initiative.

The absence of appropriate services in underserved areas also stems from socioeconomic variables, as families may need to travel long distances for assessments and interventions, leading to additional financial strain.

How could these barriers and challenges be overcome in a future National Autism Strategy?

I think it starts with outreach. We need to work hand in hand with high needs, low-resource communities to better understand what they need and what their biggest challenges are. Following that, there are a few steps that can be taken to address them such as the following:

  • making space for representation on panels, key discussion groups and strategic planning committees to ensure that their voices are heard
  • ensuring that these committees are involved in the process of reviewing relevant strategic planning initiatives.
  • working with community organizations and cultural liaisons to help with improving cultural competency and ensure that strategies that are being developed and implemented are culturally responsive
  • dedicating resources to create materials in different languages and are culturally competent so that the communities are aware of potential changes that may be occurring
  • promoting community-based research for black, indigenous and people of colour.

Also, being from the healthcare sector, it would be great to see physicians, residents and healthcare professionals have the opportunity to work in culturally diverse and underserved communities during their training.

How can the broader autism community be effective and respectful allies in supporting equity for your communities?

I think it starts with the broader autism community as a whole educating themselves and improving their own cultural knowledge and awareness. This is essential if we all want to improve our own cultural competency. This will also help with understanding our own inherent biases. Another strategy is to for community leaders to work directly with service agencies to ensure that their practices are reflective of the communities they serve. This can help ensure that service providers have a welcoming and inviting environment. This direct collaboration between the community leaders and service providers will also ensure that staff and volunteers at these agencies are representative of the clients they service. This is something that we prioritize at SAAAC and find it very useful in overcoming certain barriers.

There also needs to be a focus on developing strategies that foster collaborations between communities so that there is better understanding cross-culturally. There are some shared experiences between communities and having collaborations may help with developing long-term strategies and solutions rather than stop-gap solutions.