Proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs

The first session on Day 1 began with family speakers sharing their stories and experiences of navigating amongst BC service systems in support of their children with ND. The first, Ashley Seltenrich, shared her experience as an Indigenous mother of a preschool-aged son with ASD living in a rural community. The second speaker, Brenda Lenahan, is a single mother of a school-aged child with a rare genetic condition, who also lives in a rural community. Brenda shared her perspective as a parent, but also as an advocate, as she founded the organization BC Parents of Complex Kids Society in 2017, which seeks to facilitate parent networking and advocacy for equitable support access across conditions. Finally, Si Stainton shared her perspective both as a mother of a young adult with a developmental disability and as a Family Services Manager with the Delta Community Living Society. Parent speakers shared a number of key insights, including the importance of professionals reaching out to families in order to reduce the family’s burden to initiate the connection to support, and about the range of supports that can benefit families, including tangible resources, such as funding and specialized equipment.

Following the Learning from Families session, Navigation Summit attendees were asked, “What’s the wisdom in these families’ stories we should carry forward?” Through Mentimeter (https://​www.​mentimeter.​com), an interactive presentation tool that allows live polling from event participants, attendees provided anonymous comments that were shared in real time. One hundred and forty eight unique comments were provided in response to this question, and responses fell across three themes. First, attendees commented on the need to simplify the systems within which families navigate. There was also an expressed need for professionals to use plain language, and to be knowledgeable and up-to-date with their awareness of available services to which they can direct families. The second group of comments centered around the need for navigators to establish trust-based relationships with families that are sensitive to diverse cultural backgrounds, and for professionals to attend to their unique needs. Finally, the value of peer-to-peer connections was emphasized. Families have unique knowledge and perspectives to share, and this was perceived as a very meaningful form of support.

Attendees were then placed in small groups of 4–5 participants across 21 breakout rooms, within which they were asked what would help improve families’ experiences in navigating service and support systems. Using Miro (https://​www.​miro.​com), an online collaborative whiteboard platform, individuals discussed and posted responses. Within these discussions, attendees emphasized the need for improved communication amongst professionals, and collaboration across government ministries and agencies, in order to reduce the need for families to coordinate disjointed services. They also expressed a desire for the establishment of networks and connections amongst service providers that would strengthen communication, and professional development opportunities to improve knowledge. Finally, attendees communicated a desire that the knowledge navigators share with families be both accurate and transparent, such that families are better informed as to what services and supports are available to them rather than having to seek this information themselves. They also emphasized the importance of peer support, as connections to other families reduce feelings of isolation.

Prior to the Navigation Summit, attendees were sent a video featuring Dr. Emily Gardiner, Postdoctoral Research Fellow with the BC Children’s Hospital Research Institute and University of British Columbia Department of Pediatrics. Dr. Gardiner reviewed research findings from studies the BC research team had conducted examining terminology and role descriptions related to navigation for children with ND and their families (further details about this research and the findings can be found in Gardiner et al. [15] and Gardiner et al. (Gardiner, Wong, Miller: Navigators’ perceptions of their work in childhood neurodisability: What they do and what they call it, forthcoming). Event registrants also received a handout that included a summative visual integrating these study findings (Fig. 2). This figure illustrates the range of barriers families confront as they navigate amongst ND-related supports, the varied terms that are used to refer to these services, the principles and activities underpinning the work, as well as the ultimate goals. This Summit session consisted of 21 breakout rooms using Miro, within which attendees were asked “How does this visual and description of family support resonate with your experience and practice?” and “How can we go about devising an inclusive terminology that all stakeholders feel gets to the essence of this kind of family support work, and are comfortable to use and support?” In response to the visual, attendees suggested additional barriers that could be included, such as family legal challenges and histories of trauma. They also suggested additional values be included, such as being family-centred, trauma-informed, and strengths-based. With respect to developing an inclusive terminology, Summit attendees suggested that whatever term is used, it needs to be driven by parents and families, and be one that they connect and relate to. They also reflected that one term may not work for every family, but that adhering to plain language would be helpful.

The first session on Day 2 consisted of presentations from three BC professionals who provide navigation supports in various capacities. These professionals spoke about their agency mandates, scope of their role, and the services and supports they offer to families. The first presentation was from Carly Owen, Autism Support and Resource Specialist with Autism Information Services BC (AIS BC), a provincial government program under the Ministry of Children and Family Development that offers information on best practice treatments and supports pertaining to ASD and related disorders, as well as training to families, service providers and professionals.

The second speaker was Angela Clancy, Executive Director of the Family Support Institute of BC (FSI), a provincial non-profit society that offers volunteer-based peer-to-peer support for family members of individuals with disabilities across the province, regardless of age or diagnosis. She described FSI’s organizational structure, her history with FSI, and their vision for connecting and valuing the family, and to support building communities for families. FSI is guided by a strengths-based perspective that recognizes the family’s expertise, and strives to empower families. FSI also offers workshops and training, all of which are written and delivered by families, parent networking opportunities, and information sharing and referral support.

Finally, Kimberlee Howland, Resource Family Navigator with the Nanaimo Child Development Centre spoke, describing the therapy services and programs offered at her centre, and her specific role. As a Resource Family Navigator, Kimberlee assists families navigating complex health and service systems (e.g., education, health, mental health, funding) by connecting them with resources, facilitating opportunities for parent networking, and for educational enhancement. She also shared her perceptions about what makes an effective navigator, including knowing your community and what is available, being connected to community and provincial organizations, being relationship-based, using positive and supportive communication, having healthy boundaries, maintaining an up-to-date database of both local and provincial services, and having access to team support for when particularly complex family situations arise.

The remainder of Day 2 was devoted to attendees considering what could be done to improve navigation supports and related activities for families, and to build a community of navigation. Using Miro, the event facilitator implemented a strategy whereby attendees themselves proposed room topics, and hence ‘co-designed’ this part of the Summit. In total, 19 topics were put forth (see Table 3 for the list of topics) and each topic had a dedicated breakout room created. Attendees then self-organized into the rooms that were of interest to them, and were able to move between topics as desired. Overall, a number of strong themes emerged within these self-organized conversations. First, attendees described wanting an up-to-date inventory of available services that would be easily accessible (e.g., a web-based portal), and applicable to families of children in various stages of development, from the early years through to adulthood. Navigators also strongly expressed that they wanted a way to become and remain connected to one another, such as through a community of practice or community-based working groups, noting that nothing like this exists in this area of service provision. These networking opportunities would give them a venue through which to ask questions, brainstorm solutions, share resources, and to develop best practice guidelines for their profession. They also emphasized the need for further or enhanced education, such as on cultural safety for serving Indigenous families, as well as ways for families to be better informed about what supports could be offered through case management, and to train them on advocacy. Attendees highlighted the strong need for the family voice to be represented, and for families to be able to connect with one another through peer support initiatives. Finally, there was an overwhelming desire for a simplified system of services and supports for children, young people and families affected by ND (e.g., “one stop shop”). These discussions referenced a need for flexibility in how families access support (e.g., not tied to specific diagnoses), collaboration across ministries, services, and systems, as well as transparency from government.

The Navigation Summit closed with words and reflections from Jason Gordon, Provincial Advocate with the BC Association for Child Development and Intervention. He thanked attendees for their participation and asked them to share their responses in Mentimeter to the question, “What are you most excited about for what ‘navigational supports’ for families, and a network of navigators, could be in the coming years?” Attendees’ posted comments centred on three areas. First, they expressed their hopes for improved and continued connection amongst service providers, including improved communication, understanding of each others’ roles, and opportunities for knowledge building and sharing (e.g., through a community of practice or other type of formal network of navigators, further meetings/summits, or working groups). They also hoped for improved connections specifically amongst rural families and professionals, an up-to-date and maintained provincial online mapping of resources, and better training to be able to provide navigation supports in culturally safe ways. Finally, they shared their hope that families would be empowered by being able to easily access consistent, connected, and seamless supports through a more simplified and streamlined system.