In response to pressures from families and community groups, the Government of Alberta is committing to changing policy and practice to appropriately realign the Family Support for Disabilities program to legislation and to better serve individuals and famlies living with Autism and other disabilities.

Government of Alberta representatives held listening sessions in Calgary and Edmonton on May 11 and May 12, 2018 in response to unrest through social media channels and provincial news media.  As a follow up to the listening sessions, those attending the sessions received a document detailing “What we Heard” (click to view this document) and a letter from the Alberta Minister of Community and Social Services, the Honorable Irfan Sabir (click to view the letter).

In summary, the letter makes a firm commitment to specific changes this July 2018:

• Ending the use of “parent training” and “parent coaching” language
• Change the specialized services policy to state that parental involvement is entirely optional
• Changing policies to confirm support of direct services to children and ensure alignment with legislation
• Creation of an FSCD toolkit for families to share information about the FSCD program, services available, and options if there are concerns about access to direct services
• A transparent and accountable description of specialized services (eligibility & services available)
• Updating information, resources, forms and the FSCD website

There is also a commitment to improvements over the coming months regarding:

• The MDT process to enhance consistency, accountability and best practice
• FSCD staff training updated to support an immediate shift in practice
• A full review of the FSCD policy manual to ensure it follows legislation and direct service to children
• Explore ways to increase service providers and FSCD program staff capacity

To support collaborative efforts between self advocates, families and our government, on May 30, 2018, Autism Calgary held a Roundtable discussion with self advocates & families focused on developing solutions. (A similar event was hosted by Autism Society Edmonton in June). Autism Calgary volunteers and staff are completing our preliminary report to detail policy and practice recommendations from self advocates and famlies (this will be available ASAP).   We are meeting with provincial government leadership this week, and arranging to meet with regional FSCD program representatives.

It is worth noting that self advocates and families continue to emphasize that a socially responsible and fiscally accountable FSCD program provides families with a choice of services that are supported by evidence based practice.  Also, parents are positioned to make informed decisions, choosing services they feel will align best with their individual needs and values. Additionally, families have the means to hold FSCD representatives and service providers appropriately accountable to funds and service delivery.

With this in mind, in regards to service delivery specific to Autism Spectrum Disorder, we are encouraged by our government’s commitment to improve the FSCD program.  In recent years, the excessive focus on parent training has deviated FSCD services away from ASD specific evidence based practices. Both in more conventional models and in more recent Naturalistic Developmental Behavioral Intervention models, research indicates that supporting parent participation in programming can improve child and family outcomes.  However, research does not suggest that parental education replaces ASD specific, child focused intervention. Moreover, parent participation must accommodate individual family capacity and circumstances (employment, responsibility to other dependent family members, family health, etc…). As a result, programs that enhance the knowledge, skills, and confidence of parents (like some based on Triple P) can be an appropriate complement to ASD specific programs.  This is provided that such programs are offered in conjunction with direct services, and at the time of diagnosis or shortly thereafter. Parents offered such programs late report that the services might have been of value in the early years.

In the coming months, Autism Calgary staff and volunteers will also be meeting with individual service providers and private practice professionals in our region to better understand models of service specific to children with ASD available in our community. We hope to support families in choosing between different approaches to ASD intervention, to understand how parental involvement is supported to accommodate individual family circumstances, and if programs to enhance parent knowledge/skills/confidence are offered to complement & enhance direct services.