Objective: Various rural communities in Canada’s North face challenges due to limited targeted resources and a range of individual and family needs across disability groups and across the lifespan. Additional challenges include long distances from rural and remote locations to the services in the closest major urban area. As well as limited services and resources to address specific presenting needs. Accordingly, there was an identified need for greater navigational support. Service adaptations were needed to address the range of specific needs of individuals and families impacted by NDD. These gaps further reflected and incurred strain on our service delivery support system.
We decided to focus our work on a single community with a focused delivery approach and learning based on experiencing. We integrated focused services in the community of Watson Lake, Yukon. Like other communities across Canada, and particularly small, northern communities, there are significant challenges related to service access for people with complex developmental and health needs related to challenges obtaining accessible resources and services in a timely way. In this instance, it was determined by the community that although services were available it required working together collaboratively to explore how we could better address helping people access the existing services in the community and if in need of services outside of the local community, how that can be achieved.
Given a widely dispersed and small population, it isn’t feasible to have specific services targeted to particular diagnostic groups (e.g., autism, FASD, etc.). We thus have built on an integrated resource approach that is cross-categorical (multiple diagnoses) and available across the lifespan. We further have sought relational accountability and collective stewardship in working together for good outcomes. An anticipated outcome of this approach is that services work flexibly and collaboratively to as fully as possible address integrated solutions across the range of individual, family and community needs. Cross service responsibility is a base need.
Actions: We built our approach and plan on the basis that we must start with where the community is at. This principle emerged as important. Understanding community partners’ readiness to engage and the assets within the community has emerged as an important step in moving forward. This occurred in tandem with community partners – as the team drew on deep engagement and community networks in navigation/community building.
Fetal Alcohol Syndrome Society Yukon (FASSY) and the partners in Watson Lake developed a productive collaboration and an on-the-ground action approach to finding achievable solutions to navigational challenges. Building on community strength was key in collaboratively determining synergies and ways that navigational advancement could be built ultimately contributing to current services and drawing on already-existing community strengths. We engaged with community services/agencies through an established and long standing interagency committee. The project leads in Watson Lake have skillfully supported a process of working together to address the range of needs of people with NDD in the community. Training in areas such as specific NDD, respectful, open communication and local knowledge of resources has supported a collaborative model of care coordination and mutual accountability for a NDD community-based support.
We engaged in learning and action together which has contributed to mutual learning and community capacity. This has required addressing needs and challenges as they arise. As a recent example in the pandemic, the Watson Lake community worked together to respond to pressing intersectional needs (e.g., food security, etc.). Community resources were collectively developed in working together to address this pressing need. Beyond supporting individuals’ and families needs related to NDD therefore, the NDD team focused holistically on the range of needs and with community partners, addressed these directly and in tandem. This nimble and community-focused approach has demonstrated strong benefits for not only for individuals and families, but also for the community.
A wide range of partners including community agencies and First Nations communities, have contributed to gains. Working together collaboratively and relationally has been crucial to advancing our aims and is in keeping with the values of this initiative.
The pandemic has imposed heightened challenge and need in communities, related to decreased access to community services. Ensuring that community members have basic needs such as food security has been integral. Providing NDD navigation amidst other pressing needs, as well as offering best service in the challenging context of social distancing, have been areas of learning in moving forward.
Community understanding of the ongoing need for support for a person with an NDD has been challenging. The fact that some things cannot be “fixed” but will be something that needs ongoing support challenges most services. Creating a service where people do not get “discharged from” is difficult and not seen as successful.
Continued funding for this service is integral in moving forward. Finding ways to weave navigation resources within the range of individual and family and community services/sectors (disability services, education, housing, income security) emerges as a crucial factor in sustainability.
Outcomes: Accounts of the challenge individuals and families face, have been substantial. In responding to these challenges, the navigation team and our partners have come together to directly address needs within existing service structure or as needed, new initiatives. Individuals and families have been supported to have better access to what they need in a timely way.
One of the biggest learnings and understandings of the services is that some individuals with a NDD need someone to “walk with them” – to access services and achieve what needs to be done. The availability of the systems navigator to do this – has led to many successes for individuals and services alike. Importantly, community services have demonstrated built navigational capacity for individuals and families impacted by NDD, with a resulting stronger community ‘infrastructure’ to support need-meeting. Further funding is being sought. Further understanding of the need for System Navigation support is being discusses in relation to larger concerns like housing. The benefits of this approach to navigational support in this community has been strongly demonstrated, based on collective work and impact. Finding pathways to ensure funding sustainability are integral to program advancement.