Preschool autism services: A tale of two Canadian provinces and the implications for policy

Abstract

For children with autism spectrum disorder (ASD), a lifelong neurodevelopmental condition, assessment and treatment services vary widely across Canada—potentially creating inequities. To highlight this, the Preschool Autism Treatment Impact study compared children’s services and outcomes in New Brunswick (NB) and Nova Scotia (NS). Diagnostic practices, service delivery models, wait times, and treatment approaches differed, as did children’s 1-year outcomes and costs for families and the public sector. Considering NB and NS strengths, we suggest that an optimal system would include: rapid access to high-quality diagnostic and intervention services; adherence to research-informed practice guidelines; interventions to enhance parents’ skills and self-efficacy; and measures to minimize financial burdens for families. Our results also suggest that provinces/territories must do more to ensure equitable access to effective services, including sharing and reporting on national comparative data. Canadian children with ASD deserve access to effective and consistent services, no matter where they live.

Autism spectrum disorder (ASD), a neurodevelopmental condition, affects 1 in 66 Canadian children (1) with consequential differences in communication, social interaction, and behaviour. Symptoms usually appear in the first 2 years, and effects for children and families can be severe—yet there is considerable diversity in how individuals are affected. Common co-occurring conditions such as attention-deficit/hyperactivity and anxiety disorders (2) add to diagnostic complexity and burdens for children and families. Most children with ASD require ongoing services from the health, education, and community service sectors. Early identification and intervention are also considered essential to optimize outcomes (3) and reduce associated long-term costs (4).

Early intervention (EI) programs aim to improve quality of life for children with ASD by enhancing adaptive behaviour (communication, socialization, daily living skills) and reducing maladaptive behaviours (those causing distress or harm to the child or others). Early behavioural intervention improves children’s functioning; however, quality of randomized controlled trial evidence is low (3), prediction of individual benefit is weak (5), and community effectiveness studies are lacking (6). Various EI models have nevertheless been implemented in Canada, as elsewhere, often following strong parent advocacy (7). Several Canadian provinces/territories are also reforming ASD diagnostic and intervention services to meet growing demands (8).

To inform policy, our partnership of researchers from across Canada and policymakers from Nova Scotia (NS) and New Brunswick (NB) aimed to explore effects of differing provincial ASD service approaches through the Preschool Autism Treatment Impact (PATI) study. Specifically, we compared the effectiveness, use, and costs of ASD-specific interventions for preschoolers in these adjacent provinces. Data were gathered from families, service providers, and funders in both provinces. Smith et al. (9) described NB and NS EI programs and 1-year child outcomes; Tsiplova et al. (10) contrasted resource use and costs of ASD services across sectors for NB and NS families and public payers. (See information briefs and video at Autism Research Centre.) Here, we highlight our key results and the policy implications for Canadian children with ASD.

PATI STUDY FINDINGS

Despite being adjacent and demographically similar, ASD service approaches differed greatly in NB and NS during the study (2013–2017). Receiving a diagnosis of ASD was simpler and faster in NB—diagnosis by a physician or psychologist using clinical criteria was sufficient to access ASD-specific EI services. In NS, regional diagnostic teams followed provincial guidelines using standard measures, a lengthier process. Interventions also differed. In NB, all preschoolers received 20 hours of comprehensive EI weekly, from shortly after diagnosis until school entry, from private agencies contracted by the Department of Education and Early Childhood Development. Although agencies provided similar interventions, there was no mandated model. In contrast, in NS, children waited until at least age 4 to access limited spaces in a publicly provided 1-year EI program. The NS program, based on Pivotal Response Treatment (PRT) (11), was delivered through regional health authorities funded by the Department of Health and Wellness. Parent coaching in PRT was an important component, intended to amplify treatment intensity and promote parents’ self-efficacy (6).

We found striking differences between the cohorts of children entering their respective provincial EI programs (9). Children in NB were younger, with milder ASD symptoms, fewer behaviour problems, and higher levels of adaptive behaviour. Despite this NB profile, which is typically associated with greater intervention gains, children in both provinces gained adaptive skills at the same average rate during 1 year of EI, with both groups showing small but significant mean increases (9). That is, the NB group had a beginning advantage but both groups improved significantly and at the same rate. That these disparate groups gained skills at similar rates suggests possible differences in effectiveness of the two EI models. Factors such as parent coaching in NS may have enhanced relative effectiveness, even though treatment was briefer and delivered later in the course of ASD. Moreover, intra-provincial treatment variability was greater in NB, whereas in NS, fidelity to a provincial PRT-based model was mandated and monitored.

We also found economic differences. Public EI costs were substantially higher in NS, largely due to higher salaries for unionized healthcare workers (including speech-language pathologists integrated into EI teams), and to costs of provincial coordination (10). Yet NB families bore costs of travel to specialized EI centres, whereas in NS, providers travelled to children’s settings (e.g., daycare or preschool). NS families who were waiting to access EI also used other resources (e.g., speech-language therapy), raising both public and private costs. In NB, families used other public services such as speech-language therapy concurrently during the ASD-specific EI program. Although EI service delivery through the NS health sector increased public costs (10), better provider retention may have reduced the need for frequent staff replacement and training (Duplessis and Smith, 2017, unpublished data). Notably, in 2017, after PATI data were collected, NB shifted to a single contracted agency to increase consistency and oversight of EI quality, and also increased providers’ salaries. These changes were based on recommendations from an independent program review, informed by preliminary PATI results.

IMPLICATIONS

The PATI study illustrates provincial/territorial service variations for children with ASD arising from differences in intervention eligibility criteria, models of public/private funding and provision, modes of access, and specific treatment models (7,12). Across provinces/territories, furthermore, interventions for children with ASD are managed by different sectors including health (e.g., NS, Newfoundland and Labrador), education (e.g., NB, Prince Edward Island), and children’s or community services (e.g., Ontario [ON], British Columbia [BC]).

Adding to this complexity, ASD diagnostic policies and practices vary, influencing treatment access and eligibility. The result is substantial provincial/territorial differences in average age at ASD diagnosis (13)—affecting access to services when children are young and when interventions may be more effective. Differences are likely due partly to wait-times, but also influenced by policies regarding who may diagnose ASD and what criteria are used (14). That is, the rigour of diagnostic assessments may determine the numbers of children with the diagnosis who are eligible for ASD-specific services (9). In some provinces/territories, an ASD diagnosis confers eligibility for public ASD services only if specific guidelines are followed (e.g., BC has guidelines and maintains a registry of approved providers), whereas others accept all ASD diagnoses from physicians or psychologists (e.g., NB, ON). Adherence to diagnostic guidelines may ensure that only children with bona fide ASD are able to access specialized services. However, limited assessment capacity in many communities presents barriers, long waits, and distress for families (14).

Policy choices, such as the use of public or private treatment providers, also create different economic incentives for various payers. The contrast we found between the private and public models used in NB and NS, respectively, was echoed in recent changes in ON, where public ASD services shifted to providing funding directly to parents to purchase services on a fee-for-service basis. Some of these changes were rescinded in 2019, yet ASD services remain in flux (15). This shift and its reversal created uncertainty for families and for public sector service providers, potentially fragmenting services and undermining mechanisms for quality monitoring. Direct-funding/fee-for-service models are long-standing in BC—instituted in response to lobbying and legal challenges from parents (7). However, such models require parents to navigate funding applications, seek their own services, and evaluate whether these are effective and suitable for their children’s needs. This approach therefore risks exacerbating inequities by adding to families’ burdens, particularly for those with fewer resources (7). In the absence of national standards and oversight, the diversity of funding models across Canada creates a patchwork of ASD services, with potential inequities depending on where children live.

Building on the strengths we identified in NB and NS, an optimal system would include: rapid access to high-quality diagnostic and intervention services; adherence to research-informed diagnostic and treatment guidelines (with corresponding professional development for relevant service providers); interventions to enhance parents’ skills and self-efficacy; and measures to minimize emotional and financial burdens for families. Ensuring these qualities would help address inequities.

CONCLUSIONS

We compared services, outcomes and costs for children with ASD for two adjacent and similar provinces. We found substantial differences in diagnostic and treatment services, funding and delivery models, child outcomes, and public and private costs. These differences affect which children receive early and accurate ASD diagnoses, what kind and quality of services they receive, how long families wait for these services, and what costs accrue to families and the public sector. The cumulative effects of such policy choices in turn amplify disparities in care across jurisdictions. Our results suggest that provinces/territories need to do more to ensure equitable access to effective services, including sharing and reporting on national comparative data. Researchers and policymakers can also collaborate to help achieve these goals. The PATI study shows that such research-policy collaborations are feasible—allowing researchers and policymakers to advance a public agenda for children with ASD and their families. This matters because children with ASD deserve to have access to effective and consistent services, no matter where they live in Canada.