Early Access to Care in the Province of Quebec: A Policy Analysis Framework

Background:   Prevalence estimates suggest that Autism Spectrum Disorder (ASD) affects 1-2% of children globally (Elsabbagh et al., 2012). There is consensus that early identification and intervention for ASD can improve child functioning and family well-being, thereby reducing costs and burden to society in the long run (Khan et al., 2012). However, serious barriers currently hamper access to care across the world (WHO, 2013). Further investigations are needed to explore how policy and/or implementation barriers contribute to these delays and barriers to care. 

Objectives:   To identify the congruence between existing policies supporting early identification and intervention for ASD and the actual state of community-based early identification and intervention services in Quebec (QC), Canada. 

Methods:  

We conducted a scoping review of QC policies related to ASD (Stephenson & Mccoll, 2008) and developed an analysis framework to map existing policies to actual reports of access to care through administrative and family-based sources. Relevant provincial, federal, and international policy documents were identified. Each policy, statement, act, program description or governmental body that was identified as a primary source. Using a snowballing technique, we identified new documents or references from these primary sources. A policy analysis framework (Hill & Bramley 1986; McColl and Jongbloed, 2006) was used to extract the following data: the policy’s stated objectives, its desired outcomes, benchmarks and work plans, and mechanisms for policy implementation. A stakeholder focus group of parents, researchers, and health care professionals was held and asked to consider the extent to which identified policies are perceived as effective in achieving their stated objectives. 

Results:  

The analysis suggested a wealth of articulated policies grounded in international guidelines protecting the rights of children and consistent with medical models for chronic care (life-span, evidence-based, family-centred, and coordinated).

The stated objectives of most policies were to ensure early access to comprehensive care for families and children affected by ASD across the lifespan. The desired outcomes were to optimize access and develop specific mechanisms so that children and families can receive complementary and coordinated services across sectors (e.g. education, health). Very few policy documents described benchmarks or working plans to ensure implementation of their policies considering the systems constraints.

Review of administrative data from a large university health center alongside stakeholder input from a focus group suggested that QC is far from implementing its articulated policies. The following patterns were specifically highlighted as conflicting with these policies: (1) long wait times (up to 2 years) for diagnostic and intervention services, (2) poor care coordination across different levels of service, (3) inadequate support for caregivers, (4) disparities in care access and utilization negatively affecting families from lower socio-economic backgrounds or recent immigrants.

Conclusions:  Major disparity exists between articulated policies and their enactment in Quebec. The lack of implementation mechanisms (e.g., an analysis of system’s barriers and facilitators) may contribute to gaps in access to care.