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Creating a better future for communities through research

Pathways Autism Project

Our Partners
The project was initiated by committee of local service providers in Waterloo, Wellington and Guelph (including Trellis, KidsAbility, Kerry's Place, Family Services Guelph, MCYS and Lutherwood). It was funded Ontario Ministry of Children and Youth Service (MCYS). Project Team:
This report was prepared by Centre for Community Based Research. Team members were Andrew Taylor, Kathy Hogarth and Jonathan Lomotey. The process was guided by a committee of service providers in Guelph, Wellington County, and Waterloo Region. Members were: Elizabeth Van Ryn of Trellis (co-chair); Eric Goldberg of KidsAbility (co-chair); Deb Gauthier of Trellis; Gail Jones of Kerry's Place; Ranj Feduck of Family Services Guelph / AIR; Susan Nichelchok of MCYS; Joanne Athan of MCYS; and Walter Mittelstadt of Lutherwood.

Project Synopsis
If someone in your family has a developmental disability, getting the support you need is often stressful. For families dealing with autism and related diagnoses, the stress is often linked to long waiting lists, incomplete diagnoses, and the need to deal with a confusing and changing array of service providers. In the spring of 2007, a committee of service providers in Waterloo Region, Guelph, and Wellington County came together with the regional office of the Ministry of Children and Youth Services to start talking about ways to improve services for children and youth with autism spectrum disorders. At about the same time (but independently), the Lyle S. Hallman Foundation in Waterloo Region began to talk with local parents and grassroots groups about similar issues. Eventually, both groups contracted with CCBR to undertake research and community consultations on the topic. The core purposes of these two closely related projects were to inventory and analyze the current array of services and develop a comprehensive vision or 'pathway' about how services could work more seamlessly together. From June to December 2007, the CCBR research team conducted interviews with local and external service providers, local parents of autistic children, school board and government representatives. A literature search was also completed. At various points in the process, feedback on emergent themes was sought from an ad hoc committee of parents in Waterloo, and a group of key service providers in Guelph and Waterloo Region. Ultimately, this process led to a final Pathways report and an executive summary.

Findings In the report, we described the process of accessing services and supports as including five major phases. For most families, the process begins with problem identification, when they begin to express concerns about their child's development to a doctor, a child care worker, a teacher or friends. Even at this early stage, families sometimes find that they have to mention the concern many times before the issue is acknowledged by a professional who can help. The second stage, functional assessment, is intended to help families begin to access certain kinds of services quickly and before a formal diagnosis is made. Often, a Healthy Babies nurse or a child care resource worker is a key support at this stage. Diagnostic assessment is stage three. If all goes well, a specially trained pediatrician or psychologist provides the family with a formal diagnosis that enables them to access additional supports earmarked for children with autism and related disorders. The final two stages are referral and service delivery. Families of children who are autistic often need many different kinds of service, including treatment & therapy, specialized education & child care supports, respite & recreation, family support and financial support. They also need help planning for and managing all of the different people and organizations that provide these services.

In the current system, challenges and disconnects exist at all of these stages.In fact, our consultations led us to the conclusion that no-one - not funders, service agencies, health care providers nor families - felt that the current system was working well.

We concluded that a well-designed system of supports for children with autism would adhere to several key principles. It would, for example, make prevention and the support of the entire family system into high priorities. It would work to link service provision to efforts at raising awareness about autism among health care providers and the general public. It would also work hard to link formal services to the informal and peer-to-peer supports that are so important to families. A seamless system would provide families with more support to manage, plan and coordinate their services in such a way that they meet each family's unique needs. A seamless system, further, would recognize that services for children with autism are in turn part of a larger system that should meet the needs of all children with mental health concerns and/or developmental challenges. Ongoing feedback and reflection across all stakeholder groups was also identified as a value. At the conclusion of this project, five recommendations were made to the committee of local service providers in Waterloo,Wellington and Guelph (Trellis, KidsAbility, Trellis, Kerry's Place, Family Services Guelph / AIR, MCYS and Lutherwood). Create, implement and maintain a current and comprehensive ASD information and knowledge management service which provides monitors and communicates in a variety of ways, to all types of families. Ideally, it should not be a major service provider but should have an independent voice and a commitment. Adopt a common assessment tool and seek to create centralized, multidisciplinary diagnostic clinics or service resolution teams so that all families have a first point of contact when seeking ASD-related diagnoses.

Existing referral hubs should not be autism specific, but should manage referrals for all developmental concerns among children and youth. Referral hubs should be formally linking the referral functions currently managed by the school boards, Trellis, KidsLINK and KidsAbility/Erinoak.The feasibility of a centralized referral management service should be explored. Such a system would list all developmental services, along with referral protocols, current levels of availability and/or information about wait list length and would be designed to streamline referrals and facilitate access to services. This database should be linked regionally or provincially.

Case management for children with autism and their families should be holistic, inclusive and independent. Case management is spread across numerous organizations and is defined somewhat differently by each one. None of the case managers existing within the current service system have the capacity to provide this service in a holistic way. Referral functions should be considered as one component of case management, and case managers should take a leadership role in making the entire system simpler and more navigable.

For the full project report, follow this link.