Autism Alliance of Canada* is calling on the federal government to hasten and prioritize a National Autism Strategy (NAS) in light of the drastic changes being made to autism supports in British Columbia; changes that will significantly impact those on the autism spectrum in the province.
On October 27, 2021, the British Columbia Ministry of Children and Family Development (MCFD) announced a new service system for neurodiverse children, where one-stop Family Connections Hubs will be implemented across B.C. This system will be fully implemented by March 2025, at which point children and youth on the autism spectrum can no longer access individualized funding. Families and caregivers who cannot afford to continue to fund service providers out-of-pocket will have no other option but to receive services and supports through these one-stop family connections hubs. Furthermore, the transition to Family Connections Hubs may also lead to severing the relationships that families and youth currently have with their trusted professionals, increasing the risk of being placed on long waitlists, and having to cope with the confusion and burden of navigating a new and complex system.
Currently, the Ministry of Children and Family Development in B.C. offers a direct funding model, where Autism Funding is allocated to families and caregivers of children under the age of 18, who have a diagnosis of autism and reside in British Columbia. Up to $22,000 per year is allocated for each child under the age of 6, and up to $6,000 per year for each child aged 6 to 18. This funding helps families pay for professional supports that promote skill development for their child, including communication, social-emotional, academic and life skills.
While this model has limitations in meeting the needs of children on the autism spectrum and their families, the approach taken by the MCFD in B.C. is deeply concerning to Autism Alliance of Canada and its members for the following reasons:
- The B.C. government has not engaged in inclusive policy design: To the best of our knowledge, the B.C. government has not consulted stakeholders, including provincial or national autism organizations, autism researchers, and most importantly, Autistic self advocates and families of neurodivergent children and youth receiving funding under the Children and Youth with Support Needs (CYSN) Framework.
- The B.C. government lacks transparency regarding the evidence used to inform the implementation of Family Connections Hubs: The B.C. government has not shared an evidence-based rationale to support the implementation of “one-stop family connection hubs “ versus other models of service delivery and support. There is no indication of the evidence and data used to support the cost-effectiveness and efficiency of one model over the other to deliver critical services to children and families.
- The B.C. government has presented very little information on the implementation and operational logistics of these “hubs,” leaving autism families extremely distressed about the future of their children and youth. There is no economic or workforce modelling data to assure the community that B.C. has service provider capacity to effectively implement a hub service delivery model without increasing waitlist times to receive critical support and services.
- The B.C. government’s policy announcement has resulted in a divide between the community surrounding youth on the spectrum and the broader disability community: Historically, the B.C. government has not provided adequate support to Children and Youth with Special Needs (CYSN), hence, the announcement regarding the implementation of Family Connection Hub has further widened the gap within the disability communities. This has left families feeling as though they are competing over scarce resources in a fragmented system. All children with disabilities deserve support to be able to reach their fullest potential. Thus, there is an urgent need for an approach that will support the spreading and scaling of cost-effective and evidence-informed delivery models that adequately address the diverse needs of children with disabilities.
Unfortunately, drastic changes to regional autism policy are a frequent occurrence in Canada. More often than not, evidence to support these major policy decisions is either lacking or is not made publicly accessible to stakeholders. This leads to the assumption that these decisions are based on political ideology, rather than evidence. Provinces and territories moving from one distinct service model to another results in major inconsistencies and leaves those that are the most impacted by these changes without access to these vital supports.
Currently, access to supports for Autistic persons—children, youth, and adults—varies greatly across the country. Programs are not only delivered by distinct ministries and departments, but are also accessed via distinct requirements. This furthers the pattern of different and fragmented service delivery models across Canada.
A National Autism Strategy can help fill gaps and address challenges at a provincial level.
The federal government initiated the process of developing a National Autism Strategy (NAS) in 2019 to help address gaps discussed above. To date, the most substantial progress made towards the development of the Strategy has been a consultation on the science of autism by the Canadian Academy of Health Sciences, which is expected to be released to the public in early 2022.
Autism Alliance of Canada is calling upon the federal government to act in a timely manner and commit to a reasonable timeframe to develop and implement a NAS.
Yesterday, the Senate of Canada held the second reading of Bill S-203, “An Act respecting a federal framework on autism spectrum disorder.” The proposed legislation echoes the concerns expressed by Autism Alliance of Canada and their members, and calls upon the federal government to act on “Pay Now or Pay Later,” the Senate report published in 2007.
We urge the federal government to implement a NAS that will align services and supports across the country. This is needed to alleviate the burden faced by families when drastic policy changes are enforced regionally, such as the implementation of Family Service Hubs in B.C.. A robust National Autism Strategy should:
- Adopt inclusive policy design that centers the perspectives of Autistic people living in Canada.
- Define minimum standards of support (programs and services) and professionals across Canada to ensure that Autistic people in Canada receive equitable access to supports, regardless of their postal code.
- Provide guidance to the provinces and territories to implement evidence-informed models of supports that can be delivered across the country.
- Coordinate national collaboration and knowledge sharing mechanisms between provinces and territories, where lessons and collective evidence can be shared to inform policy decisions.
- Allocate resources to collect longitudinal data that will shed light on the effectiveness of programs as well as existing gaps within services for persons on the spectrum and their families across Canada. This will, in turn, support iterative learning cycles in autism policy development to inform and scale successful programs in other jurisdictions.
*Autism Alliance of Canada was formerly known as the Canadian Autism Spectrum Disorder Alliance (CASDA). For more information regarding our name change, click here.