Navigational support for families with children who have special developmental needs

We describe a province-wide quality improvement initiative aimed at the experience of families who have a child with neurodevelopmental special needs (neurodisability) as they seek to connect with needed services and supports. We used patient and family navigation as the strategy of primary interest. Navigation seeks to make disconnected services and supports more accessible and individualized to each patient's and family's needs. Three barriers that reduce the efficiency and effectiveness of existing resources in BC were identified: the nature and scope of navigation and navigational work are not well known or well understood, providers of navigational support are not always aware of others who provide support or the details of their work, and service providers whose primary role is clinical interventions aimed at children and youth are often unaware of or unfamiliar with family support navigation providers. Ways to improve family support navigation services and experiences include providing parents with peer-to-peer supports, tailoring navigational approaches to the patient's and family's needs, providing a centralized resource that navigators and other providers can easily use, ensuring navigators remain connected to one another, simplifying the system of services and supports, developing closer connections with existing provincial resources such as HealthLink BC 8-1-1 and BC 211, and raising clinical service providers' awareness of dedicated navigators and agencies. We argue for closer collaboration between those who provide navigational support as their primary role and those who provide it as a secondary or incidental role within a primarily clinical or therapeutic role, and we provide useful information and resources to enable clinicians to bridge this gap.