Vision: Families with children/youth with neurodevelopmental disabilities/differences (NDD) will be able to easily access needed and available services.
Objective: Need for an integrated navigation services system (INNS). Through a scoping review and community conversations with families, self-advocates and services providers numerous navigation system gaps and barriers were identified. Respondents identified 5 key improvements that would materially improve their experience in finding needed and available services: Accurate, inclusive, and relevant information, easy-to-navigate websites with relevant menus and sub-menus, knowledgeable in-person or phone navigation support, access to educational material, with links to relevant sites, ways to connect with other parents of children with NDD.
Actions: Our action plan included, (1) Inviting and engaging key partners involved in service provision or advocacy for parents of children with NDD, including the active partnership and leadership of parents/families, (2) ensuring clarity of goals and aims to guide action strategies, (3) systematically evaluating existing NDD and other navigation resource websites for guidance in optimal usability and accessibility, (4) through data ‘scraping’ of existing local websites and available databases, creating a comprehensive repository of resources for children/youth with NDD, (5) developing training materials for navigators and other support personnel, (6) collaborating with key partners offering data repositories, websites and networks in order to share the navigation training modules, (7) trialing and evaluating a peer-to-peer parent navigation support program, (8) integrating each of the above program components in a comprehensive model of navigational support for families in which a child has NDD, and (9) planning and seeking grant funds for scaling this model beyond regions to province-wide implementation.
We partnered with disability-multiple community agencies, 211 Alberta (our first target population for the training program) and the Northern Alberta Institute of Technology (NAIT). We had three teams of NAIT BC students who worked on different components of this project as part of their capstone projects and provided very constructive support. With the support of these student groups, we engaged community partners to identified key topics that are critical for navigation training for community navigators. We went through a rigorous process of content development for the creation of training modules. Community partners provided feedback on modules drafts as we worked through each module for a total of six modules (Autism, Cerebral Palsy, Fetal Alcohol Spectrum Disorder, Transitions, Pathways to Care, NDD and Mental Health Challenges). Each module had a parent’s digital story – in each case, the parent told their personal story as part of the training module. Beyond this important feature of the training, a knowledge expert was featured, along with key facts and resources.
Alberta 211 staff and leadership offered important guidance about the appropriate level, length, and content of the training modules. This content and delivery reflected the anticipated likelihood of uptake of the materials, and what would be ideal for busy navigators. Based on review by Alberta 211 and other stakeholder, the navigator training modules were refined for use by navigators and others (e.g., parents, advocates, trainees). Beyond training, we piloted parent-to-parent navigational support among parents of children with NDD. An evaluation trial identified beneficial outcomes, with plans to broader this resource across Alberta.
Outcomes: The partnerships of this initiative are a key highlight in that partners across various NDD groups and regions are working together in new ways. Together, we have moved forward in the identification of NDD family navigational needs in central and northern Alberta. Following this, we moved to strategies for systematically addressing these needs in a comprehensive, affordable, and scalable model of navigational support. Additionally, implementation and evaluation of parent-to-parent navigational support has demonstrated benefits to families. Furthermore, development and initial beta-testing of virtual NDD navigation training is underway, with planned implementation among navigators across Alberta through key partnerships, along with design and proposed implementation and testing of a province-wide NDD navigational support program.
The team is now embarking on scaling our navigational program across Alberta, with key partners. Through this integrated navigation services system, our aim is to support Alberta families in which a child has NDD access resources that they need when needed. Accordingly, the capacity-building activities of this initiative have nurtured extensive project advancement to a provincial scale. This implementation will be evaluated for child and family outcomes and widespread system impacts.